Yep.... I got engaged on Christmas eve!! I'm so happy. But it is about time! Me and Chris have officially been a couple since January 05.... 5 tears!.... you can probably guess my answer was " What took you so bloody long!!"
Awww it was sooooo sweet how Chris proposed to me :) We went out to a lovely little pub in the countyside, ordered our food and Chris gave me my Christmas card... on the front it said "To my Fiancée" and inside was a beautiful verse and at the bottom he had written "Will you marry me?" Then he gave me my gorgeous diamond ring :-D I just cried, then Liam cried and then Chris cried. How embarrassing in the pub! haha No-one really saw... I don't think!
It really was the best Christmas present I've ever had!
It'll probably take us another 5 years before we set a date LOL
Merry Christmas! And here's to a fab 2010!!
Monday 28 December 2009
Monday 30 November 2009
My opinion on radical ideas
While I am intrigued and interested in CCSVI I will still remain sceptical while it is in the trial proses, I understand these trials must be done and until we have a firm reason why we have MS they need to and always must go on.
But until then I will stick with MS being a neurological condition.
So many theories have come up about MS and what treatment is the best way to go since I have been diagnosed (5 years) They have been and gone in that time. So this is why I will remain sceptical. I will not put myself forward for stem cell or for CCSVI I will not be a guinea pig for these radical treatments when not enough is known about them. This of course is my own opinion but I do feel like I should speak out. I know some will disagree and that is how it should be, without people having different opinions we will never get to the conclusion of what causes this debilitating, life changing disease.
Much love xox
But until then I will stick with MS being a neurological condition.
So many theories have come up about MS and what treatment is the best way to go since I have been diagnosed (5 years) They have been and gone in that time. So this is why I will remain sceptical. I will not put myself forward for stem cell or for CCSVI I will not be a guinea pig for these radical treatments when not enough is known about them. This of course is my own opinion but I do feel like I should speak out. I know some will disagree and that is how it should be, without people having different opinions we will never get to the conclusion of what causes this debilitating, life changing disease.
Much love xox
Sunday 22 November 2009
DR Chris talks about LDN
Please watch this video and pass it on... Thank you!!!
http://www.youtube.com/watch?v=CVpjsDK0LPA
http://www.youtube.com/watch?v=CVpjsDK0LPA
LDN 3 days and progress!
It's been 3 days now and I wasn't expecting any changes yet... I am on the lowest dose of 1mg for this first month.
Like I said before they only thing I have noticed is vivid memorable dreams...which seem to be getting less vivid, I might add.
So I was standing in church today with my eyes closed praying and suddenly thought.... " I'm standing up un-aided!" (Usually I have to grab hold of the chair in front of me or at least peak to see if I'm level) But No. not this time! I can actually stand balanced with my eyes closed on my own! I can't tell you the last time I was able to do that since MS and before LDN!
Wow... I'm so happy!.... progress already and only 3 days on a low dose.... Please trial this! I can see the benefits for myself... we need this!
Thought I'd keep you all updated :)
Until next time
God bless
Like I said before they only thing I have noticed is vivid memorable dreams...which seem to be getting less vivid, I might add.
So I was standing in church today with my eyes closed praying and suddenly thought.... " I'm standing up un-aided!" (Usually I have to grab hold of the chair in front of me or at least peak to see if I'm level) But No. not this time! I can actually stand balanced with my eyes closed on my own! I can't tell you the last time I was able to do that since MS and before LDN!
Wow... I'm so happy!.... progress already and only 3 days on a low dose.... Please trial this! I can see the benefits for myself... we need this!
Thought I'd keep you all updated :)
Until next time
God bless
Thursday 19 November 2009
Day 1 of my LDN journey
... Or as I'm going to call it OL Operation LDN.
I took my first does (1mg for 1 month) last night before I went to bed. It is best to take LDN at night because that is when your body is replacing T-cells ( T- cells are what make you feel well! )
I was actually a bit scared before I took my dose... I don't know if this was because of all the anticipation that I had built up over the past couple of months trying to get LDN prescribed for me. I guess I have so much riding on this that I'm scared it won't work for me. Deep down I know my fears will be unfounded, even so ... I was nervous. I didn't expect that!
Like I expected I had crazy dreams, but they weren't as crazy as the dreams I had when I used 24 hour nicotine patches. Now they were crazy dreams!! I was convinced, one night that I had seen this huge bug with hundreds of legs crawl up my bedroom wall and on to my ceiling... I even got up and looked for it! So nothing like that... yet lol
According to other people's experiences, these memorable dreams only last a few weeks until my body is used to the medication... I don't know yet about whether increasing my dose will bring them back for a few weeks again... I'll have to wait and see.
I am now waiting on the recurrence of old lesions rearing their ugly head, again in other people experience this happens. But again only for a couple of weeks. SO... yeah I'm scared about that but this is a means to an end and I know it will be worth it because the chances of me getting new lesions while on LDN are few.
Anyway enough for now... Don't worry I will updating regularly on my progress.
Drug companies won't trial LDN but I will!
x
I took my first does (1mg for 1 month) last night before I went to bed. It is best to take LDN at night because that is when your body is replacing T-cells ( T- cells are what make you feel well! )
I was actually a bit scared before I took my dose... I don't know if this was because of all the anticipation that I had built up over the past couple of months trying to get LDN prescribed for me. I guess I have so much riding on this that I'm scared it won't work for me. Deep down I know my fears will be unfounded, even so ... I was nervous. I didn't expect that!
Like I expected I had crazy dreams, but they weren't as crazy as the dreams I had when I used 24 hour nicotine patches. Now they were crazy dreams!! I was convinced, one night that I had seen this huge bug with hundreds of legs crawl up my bedroom wall and on to my ceiling... I even got up and looked for it! So nothing like that... yet lol
According to other people's experiences, these memorable dreams only last a few weeks until my body is used to the medication... I don't know yet about whether increasing my dose will bring them back for a few weeks again... I'll have to wait and see.
I am now waiting on the recurrence of old lesions rearing their ugly head, again in other people experience this happens. But again only for a couple of weeks. SO... yeah I'm scared about that but this is a means to an end and I know it will be worth it because the chances of me getting new lesions while on LDN are few.
Anyway enough for now... Don't worry I will updating regularly on my progress.
Drug companies won't trial LDN but I will!
x
Friday 13 November 2009
UPDATE
Hi guys! Sorry I've not updated for a looong time!
I'm doing okay... I've had a couple MS moments through out the past few months. Ergh! L'Hermitte's is the worst. To put it in layman's terms it feels like an electric shock running down your body every time you bend your neck forward. If I could have plugged electrical items into myself then I'd have saved a fortune in utilities!
I had an update with my neurologist in October where I asked about the drug LDN (low dose naltrexone)I had heard so many good things about this, but I knew that doctors aren't readily prescribing it as it isn't a licensed on the NHS... Okay. I think I better put a link in here as it is so complicated to explain!
Here's the LDN trust's web site... have a read and see what you think... pretty impressive I think you'll agree! http://www.ldnresearchtrust.org/default.asp
So, to cut a long story short, my neauro was very supportive about me wanting to try LDN but he wasn't going to prescribe it, he did say if I could get a doctor to prescribe it then he'd be willing to monitor me.
I went a long to my own GP who hadn't even heard of it... so I gave him lots of information I had found on the net and he researched for me. He got back to me and said he thinks it's a good, positive thing and so cheap that as long as I never sued him (lol) He'd prescribe on the NHS for me!... result!!... I could have kissed him!
So....now going to get my script later today and give Dickson's pharmacy in Glasgow a call (The best and cheapest pharmacy to get your LDN from) and I'll be back keeping you all posted on how it is going for me :)
Until next time
God bless x
I'm doing okay... I've had a couple MS moments through out the past few months. Ergh! L'Hermitte's is the worst. To put it in layman's terms it feels like an electric shock running down your body every time you bend your neck forward. If I could have plugged electrical items into myself then I'd have saved a fortune in utilities!
I had an update with my neurologist in October where I asked about the drug LDN (low dose naltrexone)I had heard so many good things about this, but I knew that doctors aren't readily prescribing it as it isn't a licensed on the NHS... Okay. I think I better put a link in here as it is so complicated to explain!
Here's the LDN trust's web site... have a read and see what you think... pretty impressive I think you'll agree! http://www.ldnresearchtrust.org/default.asp
So, to cut a long story short, my neauro was very supportive about me wanting to try LDN but he wasn't going to prescribe it, he did say if I could get a doctor to prescribe it then he'd be willing to monitor me.
I went a long to my own GP who hadn't even heard of it... so I gave him lots of information I had found on the net and he researched for me. He got back to me and said he thinks it's a good, positive thing and so cheap that as long as I never sued him (lol) He'd prescribe on the NHS for me!... result!!... I could have kissed him!
So....now going to get my script later today and give Dickson's pharmacy in Glasgow a call (The best and cheapest pharmacy to get your LDN from) and I'll be back keeping you all posted on how it is going for me :)
Until next time
God bless x
Sunday 7 June 2009
next door neighbours
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
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
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
Sunday 22 March 2009
Thankful
I feel extremely thankful for my life today even more so than usual. I have learnt that Jade Goody lost her cancer battle today at he age of 27 leaving behind 2 young sons.
As I have said before, I believe God has a plan for all of us and we won't be able to know what it is untill after we pass. This how-ever does not stop the saddness and the feeling of why has this happened, because we are human and know nothing else..
I am very sad for Jade's little boys, losing their mom on Mothers day of all days.
I pray that they grow strong in faith and that this tragedy does not hinder their future in anyway.
If they are anything like their mother they will thrive and make best of all situations.
My prayers are with Jade's family at this time of grieving. I pray for strength and courage for all of them, also for anyone else having to face the cancer battle at the moment.
I don't think that we as humans know how strong we are until being strong is the only option. I also believe that God does not give us anything to endure that does not have rich rewards and blessings at the end of it.
As I said above it is impossible sometimes to physically see what these rewards may be but I think we have to have faith and trust God implicitly. Know that God's plan is perfect and it really is his buisness. We will never have any conception of the why's, what-for's and where's while we are on earth.
I am thankful today and am overwhelmingly glad to be alive. This has made me realise I need to take care of ME because life is precious and all though I know where I am going after I die, I still want to make the best of this life first, as it was given to me for a reason.
I am thankful for my loved ones and pray for their good health. I am blessed and I know it!
'When the darkness closes in Lord, still I will say blessed be the name of the Lord!'
As I have said before, I believe God has a plan for all of us and we won't be able to know what it is untill after we pass. This how-ever does not stop the saddness and the feeling of why has this happened, because we are human and know nothing else..
I am very sad for Jade's little boys, losing their mom on Mothers day of all days.
I pray that they grow strong in faith and that this tragedy does not hinder their future in anyway.
If they are anything like their mother they will thrive and make best of all situations.
My prayers are with Jade's family at this time of grieving. I pray for strength and courage for all of them, also for anyone else having to face the cancer battle at the moment.
I don't think that we as humans know how strong we are until being strong is the only option. I also believe that God does not give us anything to endure that does not have rich rewards and blessings at the end of it.
As I said above it is impossible sometimes to physically see what these rewards may be but I think we have to have faith and trust God implicitly. Know that God's plan is perfect and it really is his buisness. We will never have any conception of the why's, what-for's and where's while we are on earth.
I am thankful today and am overwhelmingly glad to be alive. This has made me realise I need to take care of ME because life is precious and all though I know where I am going after I die, I still want to make the best of this life first, as it was given to me for a reason.
I am thankful for my loved ones and pray for their good health. I am blessed and I know it!
'When the darkness closes in Lord, still I will say blessed be the name of the Lord!'
Friday 20 March 2009
My MS story
For a while now I have been meaning to write about my life with multiple sclerosis.
It is not an easy life, I grant you that, but it is by no means worthless, I am still a mother a daughter a grand-daughter and girlfriend to an incredible bunch of people who mean the world to me and visa versa. I have a lot to give!
I will begin by telling you how it began.
In the year 2002 on Boxing Day, I had the most horrific headache I have ever encountered, I mean horrible, I could not open my eyes or even lift my head off the pillow. Then the day after, my right eye felt strange…If you know MS you will know that many symptoms can only be described as strange, as it is hard to pin point exactly what you are feeling. Anyway my eyesight was kind of blurred and put a blue tinge on everything. That lasted for about 2 days before I just lost the sight in that eye totally. Very scary stuff!
I went for an appointment at the opticians, who predicted optic neuritis but sent me for a check up at the eye hospital where optic neuritis was confirmed. Okay I had it but what now?
Looking back I took it in my stride I seem to be good at doing that, I don’t know why or how… I just do. To anyone else I guess it would be devastating to be blind in one eye and not really knowing why. Thankfully I did regain my sight and was told it may not come back to the standard it was before, but I can say now it is quite good I can see, I wear glasses but with only a mild prescription.
I do have Uhthoff’s Sign, which basically means my eyes go ‘hazzy’ in the heat or when my body temperature rises due to a bath or exertion. Then goes back to normal when it drops back down again.
My next symptom. A couple of weeks after the optic neuritis was the feeling of heat in my right side. This was a strange one ( I now recognize this as normal!) My foot felt, to me to be burning hot, it gradually move up my body, I went to A and E because I had no idea what was happening, as you can imagine. There, the doctor who examined me, did all sorts of pin pricking tests on the sole of my foot and upwards, which I could feel. The outcome was… He didn’t really know and sent me away, without any advice or information. This after a while went away. So I carried on as normal.
A few months later I had pins and needles in my right leg, like the feeling you get when you have lay on your leg during the night and the blood is just starting to come back into it. But this was not the case. The feeling was all the time.
Then my hands went the same way. I visited my GP and after explaining what had been happening to me over the past few months, she told me it was looking that I may have multiple sclerosis. At that moment my heart sank, you can imagine I’m sure because MS is one of those diseases most people have heard of, but know little about, if you have never been in contact with anyone who has it.
I asked the GP what MS was, she said she didn’t want to discuss it until some tests had been done. She sent me for a blood test and that was it. I left the surgery with tears streaming down my face, not being able to think properly and with visions of a life permanently in a wheel chair or worse.
After the blood test results come back relatively normal, the next step was being reffered to a neurologist.
Because I wanted a quick diagnosis and treatment right away if it was that I had got this disease, multiple sclerosis, my dad paid for me to get a quick appointment, as the waiting list was for months in the future. We went along, my parents and I, full of questions and hope for a diagnosis of what was happening to me.
This was not to be, as MS takes notoriously long to diagnose we did not know this at the time and were rather bemused with it all. The neurologist basically told me he would send me for an MRI scan and that from this first scan, in most cases, MS is not usually diagnosed, it is just the first step and that I should go away and live my life as normally as I could, because even with a diagnosis of MS there is no cure and very little treatment. How frustrated we were! We wanted answers and all we were left with were more questions!
After I had had the scan, I went back to the neurologist, who said that the scan had showed some ‘lesions’ (scars where the myelin covering the nerve endings has been attacked by the immune system, as foreign) on my brain but it was not enough to make the diagnosis and from it he could say that there was a 10% chance of me developing MS in the next 5 years!
His advice was go away and live, try to keep stress free and don’t worry… Some advice and help that was to me!
So I did what he said to the best of my ability, I put all the symptoms I had been experiencing down to stress and more or less forgot about it. Then more of the numbness and tingling came back, I phoned up for an appointment again with the neurologist and got one after a few weeks of waiting on the NHS. He did all kinds of neurological tests and I requested another MRI scan, he said okay but it probably wouldn’t show up anything more and I was likely to get the same diagnosis as before. I took my chances and went on the waiting list for the scan, I got my appointment about 9 months after the initial consultation. And a few weeks later I was called in for the results.
I went along with my mom and son expecting more of the same. Oh no, not this time. I was given the diagnosis of Relapsing-Remitting Multiple sclerosis. This is the most common type to be diagnosed with, it means you have periods of ‘relapse’ where you get all the nasty symptoms I have been describing or worse. Then after a few weeks your body goes into remission, where you gradually get better. To what degree of remission depends on the person, there is no official remission rate it is impossible to say.
I had a lot of feelings right then, but the one I remember the most is relief. After nearly 2 years of going backwards and forwards to doctors and specialists and being told there was nothing really wrong with me, I felt it was all in my head. Now I KNEW it wasn’t!. Strange really, to be relieved at a diagnosis like that, but because I had lived with MS hanging over my head for nearly 2 years, I had researched, so I knew it was not the death sentence I had previously thought.
Some would say MS is a life sentence, without the worry of dying from it, but I see it differently, I just had to adapt my life around it, that’s all, I knew I was strong and that no matter how much I would have liked I could not take it away, give it away or have it cured. MS was part of me now, like it or not. It sure throws up some challenges and life is not always easy.
I have had very bad times when I could not do much for myself. I lost my co-ordination and muscle strength for a while, that was hard, I was also numb from head to toe. I must admit I was very scared with that one. I did some crying and feeling sorry for myself. But again in true Gem spirit I accepted it and embraced it and it went away. Admittedly, leaving me with chronic fatigue and vertigo. At this point I did have to give up working which is something that was hard to do. Work was a shut off for me. I went to work and forgot for a while, my worries and my problems and for a few hours a day, I was just a shop assistant nothing else. I liked that. But again I accepted and adapted.
So since the year 2004 my life changed. I could no longer escape life by working and I had the specter of MS constantly over my head. How did I cope?…I just did, as I always say and maintain to this day ‘I have MS it does not have me!’ How can I be any other way?
Yes it is me, if you want to look at it like that, I do have to work around it, it does not work around me. I suffer chronic fatigue on a daily basis, and I have insomnia… Work that one out!
How can you be so tired that you can’t even think anymore yet, go to bed and spend hours lying there just not being able to shut off your mind to sleep? Wow that one has me, it really does.
It is very frustrating and all though some medication I take does help in some way, with the insomnia, it is still touch and go that I get a good night sleep. I rarely do, as I have to get up in the night like, a million times, for a wee (well not a million, but it sure feels that way!)
My bladder likes being arsey too.. yeah okay, I am DESPERATE, I mean desperate for the loo, to the point where I am nearly having a very embarrassing accident right there and then. To getting to a loo, sitting down and waiting for that familiar relieving release when NO nope no wee! I sit and sit I concentrate hard I think of Niagra Falls, I do anything to make me go, but I can’t it will not release! So after sitting there for about 10 minuets or so it gradually trickles out like I’ve got all day!… Great!. It’s oh so much fun! This is called bladder retention where the muscle that releases to make you wee instead retracts.
MS does make your body contradict it self and that is a strange one to understand. But you do, you have to because like I said, you can’t change it.
I am currently not on any medication for my MS. Again this is a hard one with this illness.
You get an illness you go to the GP, you get some medication for this illness.. cured… right?
Wrong, not MS, it’s just not that simple, because in the medical world, so little is known about it e.g; why a person gets it, how it affects one person to another etc there has not been a cure found… YET… there will be, I have faith in that.
But for now there are disease modifying drugs, all of which (there are 4) are injectables. Disease modifying means they do not cure the illness but there is some chance that they slow down the progression of the illness and claim to reduce the number of relapses a person with MS suffers. The downfall is that this is not for certain. The patient who decides to go ahead with these drugs is only given around 30% chance of them not having another relapse and the same for the progression of the illness. You have to bear in mind also that these drugs come with side effects, so on top of probably still suffering a relapse you have the side effects of the chosen drug to deal with too.
Doctors can’t tell if the drugs are working on a patient very well because with the nature of MS being so unpredictable it is likely that you don’t have a relapse for a prolonged amount of time anyway. Therefore not knowing if the drugs are working or that it’s just not your time for a relapse… Go figure!
If being given the option to go ahead with the disease modifying drugs, and the patient embarks on the path of these such drugs.
They will go along to a meeting about them armed with relevant leaflets they will have been given beforehand, so they will probably have made a decision in theory. All 4 injecatables have different names; Betaferon, Copaxone, Rebif and Avonex the 3 former being injected under the skin the latter into a muscle.
You will usually make your decision to fit around your life style for example the Avonex is an only once a week injection because it is administered into the muscle unlike the other 3 which are injected under the skin.
That is just a bit of my limited knowledge on the subject. I am not a doctor and have no wish to profess to be!
I am talking simply from an MS sufferers point of view and I would like you to bear in mind this is only my view and not the view of other MS sufferers, who if spoken to would probably tell you a different story.
So I will continue by saying that I myself chose not to have any drug.
I weighed them all up quite seriously, the pros and cons and concluded they were not for me. That is not to say that in the future I will not change my mind, plus the medical MS world is advancing all the time. There is even talk of a tablet form of the disease modifying drug due out by the end of the year!
I have to say that one of my main no-no’s for the drugs was that they were all injectables. I have to confess and people who know me will all ready know I have a fear of needles. Please note this was not my only reason for not taking any drugs but none the less, it was one factor to put on the cons list. Personal choice! My drug specialist backed me up with my decision all the way and I can say, so far, I have not regretted it.
All that being said (the technical stuff) I would like to let you all know how on a personal note I cope with MS
Well first off, I take one day at a time, what I can do today I may not be able to do tomorrow. That’s okay I can live with that.
One day I may need to walk with a stick and I might even look like I have had one too many, But I can assure you I have not, I am T-total! I am a cheap date. I can look drunk without touching a drop forget things and maybe even slur my speech. Without one little drink. Clever huh?
I can laugh at myself. That is a biggie for me, laughing gets me through even the hardest of days. If others can laugh why can’t I?
If you have the right attitude you can live with anything. I consider my attitude towards life and MS to be positive. I think if you can’t beat them join them!
That is what gets me through, because I know that nothing in my power can change the fact that I have MS, I must deal with it the best way I know how, and that is with a positive attitude and humour! Life is after all, what you make it.
Faith is a big part of my life. Not only faith in God but faith in myself and others personal and none personal. My faith in my boyfriend, to be there for me, no matter what. Faith in my parents, brother and son, for always being there to help me and love me.
My friends, for being there to laugh and have a moan with.
Faith in the medical profession that one-day there will be a cure for MS.
Prayer plays a major role in my life. I pray for the courage to face anything that I may come up against, and I pray for faith. Because this ever-sure faith I have does not come from me. I cannot take all the credit for it. I believe it comes from God.
I believe it is a gift given to me, not something I have all by myself.
Prayer allows me to put before God all my fears, concerns and worries, where I leave them. Because I know that if they’re left with him I can be sure I will not have to endure anything I cannot cope with.
I can cope with anything as long as I know God is with me.
And last but not least I have so many wonderful friends with MS, whom I can talk to, anytime about what is going on with my body and they actually understand!
People without MS can never fully understand what it is like to have it, because prior to my life with MS I had never experienced anything like what goes on with my body today. It is a MSers only club!
I have found these wonderful people on line through networking sites.
I do not know anybody personally who suffers from MS and for a time I was going through it on my own, but now I have found these friends who make my life so much easier!
I am ALIVE.
I do not regret anything in my life that I have done. If I could go back, I would do it all the same.
I love my life. I love God who has made my life so much better just through knowing him personally.
I can suffer anything knowing he is always there for me and I know without a doubt this is just the start of my life. It is only the beginning. Through God I will live eternally and upon my departure from this world, I will be with him, in glory forever.
How happier could I possibly be, after knowing that!
I do not ask God why? I do not ask because I am safe in knowledge his plan for me is perfect.
I have MS. That is true but it is a small price to pay for getting this life filled with so many good things, the love of so many special people, the friendship of so many who without MS I would never have met.
Suffering makes you appreciate the good times and appreciate the things that matter. Trivial things like money mean nothing, if you have true honest pure love.
Faith hope and love but the greatest of these is love…
I do not ask for my load to be lightened, all I ask for is broad shoulders to bear it.
So that really sums me up. On an MS note anyway!
I do hope that what I have written goes a little way in explaining to others how I feel, cope and live with MS.
I wanted to let people know MS is not the end it is just another chapter!
Yours Gem.
It is not an easy life, I grant you that, but it is by no means worthless, I am still a mother a daughter a grand-daughter and girlfriend to an incredible bunch of people who mean the world to me and visa versa. I have a lot to give!
I will begin by telling you how it began.
In the year 2002 on Boxing Day, I had the most horrific headache I have ever encountered, I mean horrible, I could not open my eyes or even lift my head off the pillow. Then the day after, my right eye felt strange…If you know MS you will know that many symptoms can only be described as strange, as it is hard to pin point exactly what you are feeling. Anyway my eyesight was kind of blurred and put a blue tinge on everything. That lasted for about 2 days before I just lost the sight in that eye totally. Very scary stuff!
I went for an appointment at the opticians, who predicted optic neuritis but sent me for a check up at the eye hospital where optic neuritis was confirmed. Okay I had it but what now?
Looking back I took it in my stride I seem to be good at doing that, I don’t know why or how… I just do. To anyone else I guess it would be devastating to be blind in one eye and not really knowing why. Thankfully I did regain my sight and was told it may not come back to the standard it was before, but I can say now it is quite good I can see, I wear glasses but with only a mild prescription.
I do have Uhthoff’s Sign, which basically means my eyes go ‘hazzy’ in the heat or when my body temperature rises due to a bath or exertion. Then goes back to normal when it drops back down again.
My next symptom. A couple of weeks after the optic neuritis was the feeling of heat in my right side. This was a strange one ( I now recognize this as normal!) My foot felt, to me to be burning hot, it gradually move up my body, I went to A and E because I had no idea what was happening, as you can imagine. There, the doctor who examined me, did all sorts of pin pricking tests on the sole of my foot and upwards, which I could feel. The outcome was… He didn’t really know and sent me away, without any advice or information. This after a while went away. So I carried on as normal.
A few months later I had pins and needles in my right leg, like the feeling you get when you have lay on your leg during the night and the blood is just starting to come back into it. But this was not the case. The feeling was all the time.
Then my hands went the same way. I visited my GP and after explaining what had been happening to me over the past few months, she told me it was looking that I may have multiple sclerosis. At that moment my heart sank, you can imagine I’m sure because MS is one of those diseases most people have heard of, but know little about, if you have never been in contact with anyone who has it.
I asked the GP what MS was, she said she didn’t want to discuss it until some tests had been done. She sent me for a blood test and that was it. I left the surgery with tears streaming down my face, not being able to think properly and with visions of a life permanently in a wheel chair or worse.
After the blood test results come back relatively normal, the next step was being reffered to a neurologist.
Because I wanted a quick diagnosis and treatment right away if it was that I had got this disease, multiple sclerosis, my dad paid for me to get a quick appointment, as the waiting list was for months in the future. We went along, my parents and I, full of questions and hope for a diagnosis of what was happening to me.
This was not to be, as MS takes notoriously long to diagnose we did not know this at the time and were rather bemused with it all. The neurologist basically told me he would send me for an MRI scan and that from this first scan, in most cases, MS is not usually diagnosed, it is just the first step and that I should go away and live my life as normally as I could, because even with a diagnosis of MS there is no cure and very little treatment. How frustrated we were! We wanted answers and all we were left with were more questions!
After I had had the scan, I went back to the neurologist, who said that the scan had showed some ‘lesions’ (scars where the myelin covering the nerve endings has been attacked by the immune system, as foreign) on my brain but it was not enough to make the diagnosis and from it he could say that there was a 10% chance of me developing MS in the next 5 years!
His advice was go away and live, try to keep stress free and don’t worry… Some advice and help that was to me!
So I did what he said to the best of my ability, I put all the symptoms I had been experiencing down to stress and more or less forgot about it. Then more of the numbness and tingling came back, I phoned up for an appointment again with the neurologist and got one after a few weeks of waiting on the NHS. He did all kinds of neurological tests and I requested another MRI scan, he said okay but it probably wouldn’t show up anything more and I was likely to get the same diagnosis as before. I took my chances and went on the waiting list for the scan, I got my appointment about 9 months after the initial consultation. And a few weeks later I was called in for the results.
I went along with my mom and son expecting more of the same. Oh no, not this time. I was given the diagnosis of Relapsing-Remitting Multiple sclerosis. This is the most common type to be diagnosed with, it means you have periods of ‘relapse’ where you get all the nasty symptoms I have been describing or worse. Then after a few weeks your body goes into remission, where you gradually get better. To what degree of remission depends on the person, there is no official remission rate it is impossible to say.
I had a lot of feelings right then, but the one I remember the most is relief. After nearly 2 years of going backwards and forwards to doctors and specialists and being told there was nothing really wrong with me, I felt it was all in my head. Now I KNEW it wasn’t!. Strange really, to be relieved at a diagnosis like that, but because I had lived with MS hanging over my head for nearly 2 years, I had researched, so I knew it was not the death sentence I had previously thought.
Some would say MS is a life sentence, without the worry of dying from it, but I see it differently, I just had to adapt my life around it, that’s all, I knew I was strong and that no matter how much I would have liked I could not take it away, give it away or have it cured. MS was part of me now, like it or not. It sure throws up some challenges and life is not always easy.
I have had very bad times when I could not do much for myself. I lost my co-ordination and muscle strength for a while, that was hard, I was also numb from head to toe. I must admit I was very scared with that one. I did some crying and feeling sorry for myself. But again in true Gem spirit I accepted it and embraced it and it went away. Admittedly, leaving me with chronic fatigue and vertigo. At this point I did have to give up working which is something that was hard to do. Work was a shut off for me. I went to work and forgot for a while, my worries and my problems and for a few hours a day, I was just a shop assistant nothing else. I liked that. But again I accepted and adapted.
So since the year 2004 my life changed. I could no longer escape life by working and I had the specter of MS constantly over my head. How did I cope?…I just did, as I always say and maintain to this day ‘I have MS it does not have me!’ How can I be any other way?
Yes it is me, if you want to look at it like that, I do have to work around it, it does not work around me. I suffer chronic fatigue on a daily basis, and I have insomnia… Work that one out!
How can you be so tired that you can’t even think anymore yet, go to bed and spend hours lying there just not being able to shut off your mind to sleep? Wow that one has me, it really does.
It is very frustrating and all though some medication I take does help in some way, with the insomnia, it is still touch and go that I get a good night sleep. I rarely do, as I have to get up in the night like, a million times, for a wee (well not a million, but it sure feels that way!)
My bladder likes being arsey too.. yeah okay, I am DESPERATE, I mean desperate for the loo, to the point where I am nearly having a very embarrassing accident right there and then. To getting to a loo, sitting down and waiting for that familiar relieving release when NO nope no wee! I sit and sit I concentrate hard I think of Niagra Falls, I do anything to make me go, but I can’t it will not release! So after sitting there for about 10 minuets or so it gradually trickles out like I’ve got all day!… Great!. It’s oh so much fun! This is called bladder retention where the muscle that releases to make you wee instead retracts.
MS does make your body contradict it self and that is a strange one to understand. But you do, you have to because like I said, you can’t change it.
I am currently not on any medication for my MS. Again this is a hard one with this illness.
You get an illness you go to the GP, you get some medication for this illness.. cured… right?
Wrong, not MS, it’s just not that simple, because in the medical world, so little is known about it e.g; why a person gets it, how it affects one person to another etc there has not been a cure found… YET… there will be, I have faith in that.
But for now there are disease modifying drugs, all of which (there are 4) are injectables. Disease modifying means they do not cure the illness but there is some chance that they slow down the progression of the illness and claim to reduce the number of relapses a person with MS suffers. The downfall is that this is not for certain. The patient who decides to go ahead with these drugs is only given around 30% chance of them not having another relapse and the same for the progression of the illness. You have to bear in mind also that these drugs come with side effects, so on top of probably still suffering a relapse you have the side effects of the chosen drug to deal with too.
Doctors can’t tell if the drugs are working on a patient very well because with the nature of MS being so unpredictable it is likely that you don’t have a relapse for a prolonged amount of time anyway. Therefore not knowing if the drugs are working or that it’s just not your time for a relapse… Go figure!
If being given the option to go ahead with the disease modifying drugs, and the patient embarks on the path of these such drugs.
They will go along to a meeting about them armed with relevant leaflets they will have been given beforehand, so they will probably have made a decision in theory. All 4 injecatables have different names; Betaferon, Copaxone, Rebif and Avonex the 3 former being injected under the skin the latter into a muscle.
You will usually make your decision to fit around your life style for example the Avonex is an only once a week injection because it is administered into the muscle unlike the other 3 which are injected under the skin.
That is just a bit of my limited knowledge on the subject. I am not a doctor and have no wish to profess to be!
I am talking simply from an MS sufferers point of view and I would like you to bear in mind this is only my view and not the view of other MS sufferers, who if spoken to would probably tell you a different story.
So I will continue by saying that I myself chose not to have any drug.
I weighed them all up quite seriously, the pros and cons and concluded they were not for me. That is not to say that in the future I will not change my mind, plus the medical MS world is advancing all the time. There is even talk of a tablet form of the disease modifying drug due out by the end of the year!
I have to say that one of my main no-no’s for the drugs was that they were all injectables. I have to confess and people who know me will all ready know I have a fear of needles. Please note this was not my only reason for not taking any drugs but none the less, it was one factor to put on the cons list. Personal choice! My drug specialist backed me up with my decision all the way and I can say, so far, I have not regretted it.
All that being said (the technical stuff) I would like to let you all know how on a personal note I cope with MS
Well first off, I take one day at a time, what I can do today I may not be able to do tomorrow. That’s okay I can live with that.
One day I may need to walk with a stick and I might even look like I have had one too many, But I can assure you I have not, I am T-total! I am a cheap date. I can look drunk without touching a drop forget things and maybe even slur my speech. Without one little drink. Clever huh?
I can laugh at myself. That is a biggie for me, laughing gets me through even the hardest of days. If others can laugh why can’t I?
If you have the right attitude you can live with anything. I consider my attitude towards life and MS to be positive. I think if you can’t beat them join them!
That is what gets me through, because I know that nothing in my power can change the fact that I have MS, I must deal with it the best way I know how, and that is with a positive attitude and humour! Life is after all, what you make it.
Faith is a big part of my life. Not only faith in God but faith in myself and others personal and none personal. My faith in my boyfriend, to be there for me, no matter what. Faith in my parents, brother and son, for always being there to help me and love me.
My friends, for being there to laugh and have a moan with.
Faith in the medical profession that one-day there will be a cure for MS.
Prayer plays a major role in my life. I pray for the courage to face anything that I may come up against, and I pray for faith. Because this ever-sure faith I have does not come from me. I cannot take all the credit for it. I believe it comes from God.
I believe it is a gift given to me, not something I have all by myself.
Prayer allows me to put before God all my fears, concerns and worries, where I leave them. Because I know that if they’re left with him I can be sure I will not have to endure anything I cannot cope with.
I can cope with anything as long as I know God is with me.
And last but not least I have so many wonderful friends with MS, whom I can talk to, anytime about what is going on with my body and they actually understand!
People without MS can never fully understand what it is like to have it, because prior to my life with MS I had never experienced anything like what goes on with my body today. It is a MSers only club!
I have found these wonderful people on line through networking sites.
I do not know anybody personally who suffers from MS and for a time I was going through it on my own, but now I have found these friends who make my life so much easier!
I am ALIVE.
I do not regret anything in my life that I have done. If I could go back, I would do it all the same.
I love my life. I love God who has made my life so much better just through knowing him personally.
I can suffer anything knowing he is always there for me and I know without a doubt this is just the start of my life. It is only the beginning. Through God I will live eternally and upon my departure from this world, I will be with him, in glory forever.
How happier could I possibly be, after knowing that!
I do not ask God why? I do not ask because I am safe in knowledge his plan for me is perfect.
I have MS. That is true but it is a small price to pay for getting this life filled with so many good things, the love of so many special people, the friendship of so many who without MS I would never have met.
Suffering makes you appreciate the good times and appreciate the things that matter. Trivial things like money mean nothing, if you have true honest pure love.
Faith hope and love but the greatest of these is love…
I do not ask for my load to be lightened, all I ask for is broad shoulders to bear it.
So that really sums me up. On an MS note anyway!
I do hope that what I have written goes a little way in explaining to others how I feel, cope and live with MS.
I wanted to let people know MS is not the end it is just another chapter!
Yours Gem.
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