" But you dont look sick"- The spoon Theory

"But You Don't Look Sick"....Taken from PatientsLikeMe.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 spend 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 spend most of our time laughing.
As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick.
I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS.
She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert.
She carried me out when I couldn't walk another step, what else was there to know?
I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS.
Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. 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 person with MS goes through every day with clarity?
I could have given up and 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 her in the eyes and said, " Here you go, you have MS."
She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons.
The cold metal spoons clanked together as I shoved them into her hands.
I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.
The healthy have the luxury of choice, a gift most people take for granted.
Most people start the day with an 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 their actions will have. So for my explanation, I used spoons to convey this point.
I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "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 MS, 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. Little did she know how serious the game would become.
I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons.
But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn't guarantee 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 the game 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 MS.
I asked her to list off her day, including the most simple tasks. 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 your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!"
I quickly took away a spoon and she realized she hasn't even gotten dressed yet.
Showering cost her another spoon, just washing her hair and shaving her legs.
Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning.
Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order.
You cannot simply throw clothes on when you have MS...its just not that easy.
I think she started to understand when she theoretically didn't even get to work yet 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 has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.
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 the 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 on her computer for too long.
She was forced to make choices and to 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 two spoons left.
If she cooked, she wouldn't have enough energy to clean the pots.
If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. 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 maybe finally 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 answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it.
I handed her a spoon I had been holding on 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."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything.
I fight this very 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 the 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 and my own body before I can attack any one 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 having a chronic illness and being healthy.
It is the beautiful ability to not think and just do. I miss that freedom.
I miss never having to count my spoons.
After we were emotional and talked about this for a 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 and we walked out of the diner. I had 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 every day?
I don't have room to waste them, and I choose 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 look at their own life a little differently. I think it isn't just good for understanding MS, 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 words, every time 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.

Taken from PatientsLikeMe.com

Please dont...

PLEASE DON'T…

Don't assume because I look well

That I feel well.

Looks can be very deceiving.

Many days I look great but I feel terrible.
Don't ask me how I feel unless you really want to know.

You may heara lot more than you are prepared to listen to.
Don't tell me you know how I feel.
No-one knows how anyone else feels.
Two people with the same disease may feel totally different.
Don't tell me about your Aunt Gertrude
And her MS and how well she managed in spite of it.

I am not Aunt Gertrude and I'm doing my best.
Don't tell me" It could be worse."

Yes, it could be ,but I don't need to be reminded.
Don't decide what I am capable of doing.
Allow ME to decide what activities I can do.
There may be times I make the wrong

Decision, and if I do I'll know it soon enough.
Don't be upset that I cannot ease my problems.

It won't do any good for any of us to be miserable.
Don't assume that because I did a certain activity yesterday
that I can do it again today.
MS is ever changing.

Do realise that I am Angry and
frustrated with the disease -
NOT WITH YOU

Sunflowers in November- the beginning

It was a beautiful bright but cold November morning in 2006

I paced the pavement as i chain smoked my third cigarette of the morning.
Seagulls overhead stalked the fishing boat and and i watched as everyone started their day whilst i waited for 9.00 am to arrive.

So, i had Multiple Sclerosis.. i had woken every morning since i was told by the neurologist two weeks before that my brain had white plaques which was indicative of MS, with those words in my head.
I have MS, I have MS, I have MS....... like some strange kind of incantation.

It was a normal day in October , October 6th 2006 ...a Friday when i was diagnosed with Multiple sclerosis ,after about three weeks of experiencing a weird face.
It started as an itching sensation on the right side, i thought i had an allergic reaction to an insect bite or something.
For days I soaked my bandanna in water and rested it against my face for relief and took piriton. We were on holiday in North Yorkshire.
Gradually the itching turned to a surface numbness and my eye was kind of blurry.. like i had sleep of a stringy kind on the surface of my eye that wouldnt move when i rubbed it.

We walked on the moors, and every evening at 6.00pm we watched as startlings came into roost in the trees behind our cottage..hundreds of black specks dancing in the sky.

The blurring of my eye turned to itchyness of the actual eyeball, that made me want to pop it out and dig around behind it. And my scalp on the right side was itchy -numb too.
On our return a visit to the doctor was in order.

In another two weeks the roof of my mouth was numb and i couldnt taste food properly, and weirdly everything smelt of vegetable soup!

Doc did some blood tests, and said it was probably a virus and the symptoms would settle in time. a virus made sense as i had blocked sinuses for a couple of months.
I recognised the tests she had written on the pathology form, due to my biochemistry training. So i knew what it was that she was wanting to rule out, so i asked her are you considering MS ?
At this point i knew very little about the disease, but of course i had tentatively googled. But hadnt taken much in and wasnt overly worried about it.. i really didnt think it would be MS. My self awareness is such that i know i could have a tendancy to worry after having researched things .. but i truely wasnt overly concerned. Denial phase even before diagnosis maybe?
All came back negative, so she said she wanted to do a MRI scan which would mean a wait , but she wanted to refer me to a neurologist
By now my symptoms were diminishing to a certain degree but the sight in my right eyes wasnt right still, and when i got hot my face itched like mad.

It was whilst at work that my eye was such that i couldnt see the computor screen properly , so I went to occupational health. The nurse examined me and rang a collegue for advice.

They were concerned that i may have a tumour, so before i knew it i was being rushed to A&E by taxi for a CT scan on my brain. The CT scan was "unremarkable"...relief no tumours.

When i saw the Neurologist, he examined me. Tested relexes and found nothing " remarkable".
He referred to the letter from my Gp, in which she she said i had a concern regarding MS.
He insisted that it was very unlikely , i assume because of the negative blood test and neuro exam, but reluctantly agreed to refer me for a brain Mri scan. And asked if i wanted a follow -up appointment or wait for him to contact me to say it was negative.

Of course i wanted a follow-up appointment!
If the symptoms were still there then i wanted to know what it was.

off i trundled.. COOL ,he obviously didnt think it was MS.


By the time i had my brain MRI scan, all i was left with symptoms wise was some numbness on the roof of my mouth.
A month passed, and on day of my follow-up appointment , we went shopping .
I thought about cancelling it as i was feelling fine now, and as they hadnt contacted me saying they found something i felt i was just going throught the motions.
The follow up appointment was much like any other appointment with a consultant that
ive had -and ive seen lots over the last twelve years due to an ongoing lower back condition.

It was , what do they say? ...." unremarkable" in its difference from the other specialist consultations.
The same lack of bedside manner and compassion that i had come to expect.
Shortly after taking a seat, he took out my scans and placed them on the lamp.
"There is no easy way to say this , so i will just say it. You have plaques on you brain that are indicative of MS".

The delivery of this shocking news, or i could say the shocking delivery of this news , left us stunned.
I believe there was a little time spent scribbling bar graphs, but i came away with no understanding of what this meant for me.
Straight into action, i asked
"Is there was anything that i can do to help, diet etc?
"No.. there are lots of fandangled diets out there, but no proof that they work."
"Is there anything i shouldnt do , to look after myself?"
"No , carry on as usual, whatever happens in the next five years will tell us what type you have "

Later that day i was angry. Really angry! Not for the cruel card i had been dealt , perhaps misdirected to the consultant.. i checked myself on that one!

But because of the way that the consultant handled it all.
My partner works in a hospice and so is used to breaking bad news, was horrified by his lack of explanation and the fact that he gave no perspective on what i might mean for me at all.
I realise now that this disease is so varied there is no way of telling how its going to affect someone. It has a path of its own as far a i can tell.- But this needs to be explained.

Days later, i was even more angry!
I cannot believe that I was offered so little in the way of explanation of the disease and its nature.
What made me most angry is that MS by nature often affects young people.
And there was a specialist in MS who had no consideration of the importance of empowering an individual to do all they can to look after themselves, backed by scientific evidence or not!
As a 39 year old who has 12yrs experience of needing to take care of my body in ill health I felt that maybe i was lucky to have a particular slant on such things .

Yes , do what you are physically capable of , course you gotta live live to the full, but there was no reference to eating healthily, resting when you need to , minimising stress and generally taking care of yourself.
I certainly wasnt doing any of that when i was in my twenties!


Thankfully there is a whole lots of great information and support out there.

Stubbing my third cigarette out on the kerb, i walked into the surgery. A month had past since my diagnosis and this was the first time that i had seen my Gp since then.

She spoke to me in some depth about the nature of MS. Told me that as I had an almost complete recovery from sensory symptoms and not motor, and that i was close to 40yrs old that there was a chance that i may well never have another episode. And that I may well be in a "benign category".

I left knowing that the future was uncertain.. I heard myself and smiled ...but it is isnt it!
I knew that there were things i could do to look after myself.
There was an intensity to life that i realised Ihad let drift by me for a while.
A brightness, a euphoria.
I felt as though i had ben given permission to live.. to really live, with both eyes and heart fully open. That i had been given a gift as it were, a reminder to experience things fully, moment to moment.

As I walked away from the surgery towards the harbour, seagulls circled.
The November sun was warm on my back and to my left in an sea spray and wind exposed garden , right on the on the seas front in full bloom .. was a Sunflower
....a Sunflower in November!