I am having a moan. I hope you don't mind... my next door neighbour, or shall we call it my NDN as typing the full words is going to make me moan and bitch even more.
so here we go my NDN is such a moaner!
I think in all fairness I am a relatively good neighbour I don't moan I don't complain I don't play music loud until all hours of the night etc blah blah blah
Now lets face it, we don't get many sunny days in the UK and last weekend was a particularly sunny warm weekend and as it was my moms birthday we decided to have a barbeque... I spent hours making the garden look pretty you know the usual garden jewellery, fairy lights, solar powered path enhancers (whatever they are?!) but the jist is I was pleased so.. ( I'm digressing here a little bit) We get the chiminea (little clay thing that you burn logs in.. pointless I know but even so..)on the go and light the barbeque and start to enjoy our evening, when a voice from nowhere... kind of like the voice from above but without the angel chorus and trumpets and all the clouds parting and rays of light shining down on us, goes a little something like this....
'excuse me, but can you tell me when I am allowed to have my back door open, as that smoke has been going on too long!'
I mean c'mon! if you're going to complain at least come to the bloody front door! and not hide in your bedroom shouting through the window! aaarrrrggghhh!
This is coming from the woman who a couple of months ago came round about tea time and knocked the front door and said and this is verbatim.... 'I hope you don't mind me coming round, but would you mind shutting your kitchen draw a bit quieter please? as I have a migraine and it's echoing all through my house'
I was so shocked I just said 'erm... yeah of course, sorry!' Can you believe that stupid reply! you know after you have had these things happen, you lie in bed at night replaying it, and you come up with the best come backs ever! but no it had passed so I thought of what I could say to her and I felt like going round to hers and saying 'erm I hope you don't mind me coming round, but it's 1 am and I can hear you breathing and I am trying to sleep, would you mind just stopping for tonight thank you very much' But I refrained, maybe next time!
Well getting that off my chest has gone some way in helping me calm down a bit. I think my NDN needs to learn to live and let live, if not that then move into a log cabin 1000 miles away from the nearest town!
G
Sunday 7 June 2009
Saturday 6 June 2009
thoughts...
I think sometimes I take my illness a little too well, I don't know what other people think, I just hope people don't get the wrong idea about me, of course if I could have a choice I would never have even heard of multiple sclerosis let alone have it! BUT seeing as I do and as I've said before, learnt so much from it then looking back I wouldn't change it.
Enough about MS ... it's all I seem to talk about LOL but believe me MS is a small part of who I am)
I'm happy with who I am I have a fab boyfriend (soon to be fiance! hint hint! *coughs*)
And my little boy... not so I little I admit, but always my little boy, is growing up so fast, I can hardly believe he will be 13 this year! oh my goodness, where on earth did all the years go! It's scary I have been a mother for 13 years.. I can't even remember what life before Liam was like... well considering I had him when I was 17 then there wasn't much life before I became a mother.
For so long after me and Liams dad split I didn't really know who I was or really what I wanted, then all of a sudden it fell into place, sorry to bring it up again, but MS came into my life as did Chris my lovely man, these 2 big events kinda decided things for me, and I'm a happy bunny. Don't get me wrong, I have bad hair days.. like all of us, days when I think I'm ugly and haven't got much going for me, I even cried my eyes out about having got to the age of 30 without owning a wardrobe! :-/
but I have to say 95% of the time I'm content, there is always room for improvement of course but that all comes in time.
I don't tend to write down the crappy stuff... may be I aught to. I don't know... there isn't much of it so maybe I'll try the next time I get up and everything is crappy.
Keep checking back.. the ever positive Gem will one day be not so much! LOL
ta ta for now
G
Enough about MS ... it's all I seem to talk about LOL but believe me MS is a small part of who I am)
I'm happy with who I am I have a fab boyfriend (soon to be fiance! hint hint! *coughs*)
And my little boy... not so I little I admit, but always my little boy, is growing up so fast, I can hardly believe he will be 13 this year! oh my goodness, where on earth did all the years go! It's scary I have been a mother for 13 years.. I can't even remember what life before Liam was like... well considering I had him when I was 17 then there wasn't much life before I became a mother.
For so long after me and Liams dad split I didn't really know who I was or really what I wanted, then all of a sudden it fell into place, sorry to bring it up again, but MS came into my life as did Chris my lovely man, these 2 big events kinda decided things for me, and I'm a happy bunny. Don't get me wrong, I have bad hair days.. like all of us, days when I think I'm ugly and haven't got much going for me, I even cried my eyes out about having got to the age of 30 without owning a wardrobe! :-/
but I have to say 95% of the time I'm content, there is always room for improvement of course but that all comes in time.
I don't tend to write down the crappy stuff... may be I aught to. I don't know... there isn't much of it so maybe I'll try the next time I get up and everything is crappy.
Keep checking back.. the ever positive Gem will one day be not so much! LOL
ta ta for now
G
my relationship with MS
I was having a chat last night with my partner Chris, about life and things, and he asked how I thought MS had shaped my life, well I replied without thinking: I think MS has enhanced my life.
After I'd said it, I was shocked and a little sad and I didn't say much for a while, I just thought on my reply.
It was a strange reply, but when I had thought about it I realised that because of MS I am grateful for everyday, I am appreciative of all my wonderful family and friends, I have learnt to smile through bad times, and the cup is always half full and never half empty!
I also tried remembering my life before MS and I realised I couldn't remember it, that made me really sad, and although I have accepted MS in my life, I was angry with it for taking this away.
What I do remember though, is never being thankful for my life and always taking it for granted. I was complacent about good health and didn't respect myself like I do now, I didn't know my own body but now I know it.. excuse the pun, 'like the back of my hand'!
MS and I have a love - hate relationship, of course I hate it, it makes my body do crazy things, it hurts, it feels strange, it trips me over, and worst of all it laughs at me, when life is going good, it throws something in just to remind me it's still here.
But like wise it has shown me what life is all about, it's shown me life on this earth is way too short and precious to waste a single minute, it's shown me that even though the human body is strong it is in turn also very fragile and you should take care of it, it's shown me how to be strong, and now I know, you don't know how strong you are until being strong is the only option, and most of all it's shown me how to cherish everything, even the little things, don't argue with anyone.. you're wasting precious energy and precious time that you could be smiling and laughing
I came to the realisation that the most strongest , positive people I know are people with an illness/disability. People who have good health seem to waste it or don't embrace it, people with illness/disability are thankful and grab hold of every moment, this makes for a strong bunch of people!
So this is why my first response to the question: how has MS shaped your life? was... It has enhanced my life, I can't say it any other way, it sounds strange I know but it is also true
After I'd said it, I was shocked and a little sad and I didn't say much for a while, I just thought on my reply.
It was a strange reply, but when I had thought about it I realised that because of MS I am grateful for everyday, I am appreciative of all my wonderful family and friends, I have learnt to smile through bad times, and the cup is always half full and never half empty!
I also tried remembering my life before MS and I realised I couldn't remember it, that made me really sad, and although I have accepted MS in my life, I was angry with it for taking this away.
What I do remember though, is never being thankful for my life and always taking it for granted. I was complacent about good health and didn't respect myself like I do now, I didn't know my own body but now I know it.. excuse the pun, 'like the back of my hand'!
MS and I have a love - hate relationship, of course I hate it, it makes my body do crazy things, it hurts, it feels strange, it trips me over, and worst of all it laughs at me, when life is going good, it throws something in just to remind me it's still here.
But like wise it has shown me what life is all about, it's shown me life on this earth is way too short and precious to waste a single minute, it's shown me that even though the human body is strong it is in turn also very fragile and you should take care of it, it's shown me how to be strong, and now I know, you don't know how strong you are until being strong is the only option, and most of all it's shown me how to cherish everything, even the little things, don't argue with anyone.. you're wasting precious energy and precious time that you could be smiling and laughing
I came to the realisation that the most strongest , positive people I know are people with an illness/disability. People who have good health seem to waste it or don't embrace it, people with illness/disability are thankful and grab hold of every moment, this makes for a strong bunch of people!
So this is why my first response to the question: how has MS shaped your life? was... It has enhanced my life, I can't say it any other way, it sounds strange I know but it is also true
Monday 1 June 2009
Disabled parking bays
Okay I am going to voice something that has gotten on my nerves for some time now. I hate hate hate the look I get when I park my car in a disabled parking space... I bet you know what look I mean... the one where you can see what's ticking over in their head.. it probably goes a little something like this " Hmmmm she doesn't look ill :-/ bloody kids these days nothing but chancers, she's probably using her grand-parents badge... Yeah that's it! She's using someone elses badge! umph makes me so mad"
I feel like getting a tattoo on my forehead saying; NO THIS NOT MY GRAND-PARENTS BADGE, YES i AM SICK TOO, EVEN THOUGH I MIGHT NOT LOOK IT TO YOU. NOW BUGGER OFF AND MIND YOUR OWN BUSINESS!
What are they expecting me to do??? Park up, open the door and just fall out of the car? crawling towards the supermarket trolly ... Yeah actually I think that would do it, THEN and only then will a girl of my age, parking in a disabled space, be worthy, in other peoples eyes for a blue bloody parking badge!
I feel like getting a tattoo on my forehead saying; NO THIS NOT MY GRAND-PARENTS BADGE, YES i AM SICK TOO, EVEN THOUGH I MIGHT NOT LOOK IT TO YOU. NOW BUGGER OFF AND MIND YOUR OWN BUSINESS!
What are they expecting me to do??? Park up, open the door and just fall out of the car? crawling towards the supermarket trolly ... Yeah actually I think that would do it, THEN and only then will a girl of my age, parking in a disabled space, be worthy, in other peoples eyes for a blue bloody parking badge!
I have MS it does not have me!
Having MS has taught me a lot of things, it has taught me to appreciate the good times and smile through the bad.
It has taught me that laughter is ultimately the best medicine.
I have laughed at myself so may times along the way and I look back not with gloom and sadness but experience and lots of memories thanks to laughter, not all bad ones.
I have discovered true faith in lots of ways through family, friends and God
I appreciate everyday and am thankful to have been given life.
I have realized it is not my right to be healthy but it IS my right to have a positive attitude.
I am not angry that I have MS I believe there is a reason for it. And one day I will KNOW what it is.
I can categorically say that whatever MS throws up for me, I will face it head on with a fighting spirit and will never be defeated!
I realize that no matter how down I feel or how ill I get that there is always someone worse off than myself.
I do not ask God for a lighter load in this life, all I ask is for strong shoulders to carry it.
And I believe I have pretty strong shoulders!
I am grateful to the medical profession. They are working hard to find a cure for MS and I have faith that there will be a cure found.
I am thankful for all the able bodied people who fund raise to provide funding to make other people more aware of MS and what suffers have to endure on a daily basis.
Most of all I just love life. I am exited to see how it changes. What other friends I can make a long the way.
How many more beautiful places on this earth I can visit that will make me even more thankful to be alive.
How many people I can help and advise while they’re starting out on their MS path, by listening and talking things through.
I believe MS is not the end. It is just the start of a new chapter
It has taught me that laughter is ultimately the best medicine.
I have laughed at myself so may times along the way and I look back not with gloom and sadness but experience and lots of memories thanks to laughter, not all bad ones.
I have discovered true faith in lots of ways through family, friends and God
I appreciate everyday and am thankful to have been given life.
I have realized it is not my right to be healthy but it IS my right to have a positive attitude.
I am not angry that I have MS I believe there is a reason for it. And one day I will KNOW what it is.
I can categorically say that whatever MS throws up for me, I will face it head on with a fighting spirit and will never be defeated!
I realize that no matter how down I feel or how ill I get that there is always someone worse off than myself.
I do not ask God for a lighter load in this life, all I ask is for strong shoulders to carry it.
And I believe I have pretty strong shoulders!
I am grateful to the medical profession. They are working hard to find a cure for MS and I have faith that there will be a cure found.
I am thankful for all the able bodied people who fund raise to provide funding to make other people more aware of MS and what suffers have to endure on a daily basis.
Most of all I just love life. I am exited to see how it changes. What other friends I can make a long the way.
How many more beautiful places on this earth I can visit that will make me even more thankful to be alive.
How many people I can help and advise while they’re starting out on their MS path, by listening and talking things through.
I believe MS is not the end. It is just the start of a new chapter
The spoons theory
But You Don’t Look Sick….
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 medicine 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 M.S. 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 M.S. 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 medicines 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 M.S. 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 M.S.
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; I grabbed spoons off of the other tables. I looked her in the eyes and said, “Here you go, you have M.S.” 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 M.S. 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. 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 M.S. 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 M.S., 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 M.S. 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 M.S.
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 medicine 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 day’s 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 M.S. — it’s 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 M.S. 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 spoons and I choose to spend this time with you.”
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 medicine 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 M.S. 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 M.S. 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 medicines 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 M.S. 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 M.S.
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; I grabbed spoons off of the other tables. I looked her in the eyes and said, “Here you go, you have M.S.” 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 M.S. 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. 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 M.S. 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 M.S., 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 M.S. 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 M.S.
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 medicine 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 day’s 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 M.S. — it’s 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 M.S. 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 spoons and I choose to spend this time with you.”
Letter to MS
Dear Multiple Sclerosis,
I do not regret to inform you that you will NOT be my disease this week. You will not pass GO and will not collect £200. In fact, you must leave the premises (I.E my body) immediately and you will not receive any severance package of any kind. I will not miss you and will not be sad to see you go. If you contact me in any way, shape or form this week, I will immediately contact my heavies and have them kick your arse. I have plans and you will NOT ruin them for me. If you are desperately in need of a host body, I suggest Sadam Hussain.
Sincerely,
not your friend
Gem
I do not regret to inform you that you will NOT be my disease this week. You will not pass GO and will not collect £200. In fact, you must leave the premises (I.E my body) immediately and you will not receive any severance package of any kind. I will not miss you and will not be sad to see you go. If you contact me in any way, shape or form this week, I will immediately contact my heavies and have them kick your arse. I have plans and you will NOT ruin them for me. If you are desperately in need of a host body, I suggest Sadam Hussain.
Sincerely,
not your friend
Gem
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