“Only fools and rakes fall ill, my boy. You know me: I am busy from morning till night and abstemious, so of course I am well.” Nicholas Bolkonski in Tolstoy’s War and Peace
With the appointment confirmation letter neatly folded into the breast pocket of my winter coat, I arrive ten minutes early at the National Neurology Hospital in Central London on a fresh Wednesday afternoon to meet with a highly regarded medical researcher and practitioner who informs me in a softly-cultivated Anglo/Indian accent that the inflammation they detected in my brain five months back was neither an isolated nor an inexplicable happening, but is instead attributable to my having developed Multiple Sclerosis.
This was not the news I had hoped for and it really kicked the chair as regards a pleasant transition into the second half of the week. I was told much of what I already know, i.e. that the spectrum of MS is a very broad and that there is a chance that symptoms of the disorder may never make themselves known again. I’m told to increase my vitamin D intake (although initial studies have so far failed to indicate any association between increased vitamin D levels and a reduction in the severity of MS) and to ensure that I get my flu jab every winter so as to lower my body’s exposure to opportunistic infections. We chat about music, work, and my headaches. He tells me that any other information I may require will be provided by a nurse back in the waiting room. I’m then escorted to the hospital’s phlebotomy department to have a blood sample taken before once again being strapped into an MRI machine and asked if I would like to listen to a particular radio station (I asked for BBC Radio 4 – which is perhaps the most British thing conceivable, second only to lapsarian guilt and an innate inability to complain about poor service in restaurants) while they stream magnetic energy through my organic bowling ball. Back in the waiting room, I’m given a few pamphlets and a phone number should I have any further questions. They make an appointment for a check-up in 6 months and, with a professionally honed but clearly insincere smile, I’m told that I’m free to go and wished well. The middle aged lady with whom I share the elevator to the ground floor tells me she has had MS for almost 20 years, she’s in a wheelchair and has some difficulty getting the words out of her mouth on account of her poorly functioning facial muscles. I don’t smoke, but cadge a ciggie from a guy standing outside the hospital entrance and go for an expensive breakfast at a cafe round the corner. I’m annoyed that I took the whole day off from work for this bullshit.
It’s two weeks later and I have before me a copy of the letter sent from the consultant neurologist to my GP. According to Doctor Kapoor:
The findings of lesions in the brain scan confers a reasonably high probability that further clinical attacks may occur over the years,
A prospect – I’m sure I don’t need to tell you – that fills me with nothing but excitement and expectation for marvelous times ahead. It’s difficult to explain just how unusual an impression this kind of news leaves on the mind. Some of my immediate thoughts were just too fast, scattered and voluminous to even begin attempting to articulate through words. As soon as I go about trying to structure what I’m thinking into any sort of coherent expression, I am already presenting a thoroughly lacking and vastly misleading account of what’s actually going on inside my head. The truth is that I’m not thinking about this in an organized or pragmatic manner at all, while I was in that consultation room, sensible or detached thinking was almost impossible. And it’s not like I am even dedicating the entirety of my attention to the matter because life goes on and the world does not stop for bad news; bills need to be paid, friends entertained, meals to be cooked, bins to be emptied. I’m devastated, of course, but also morbidly fascinated as to how this disease will show itself next. I’m not the first person to get ill, and I won’t be the last. Terminal illness may be an intriguing topic for reading, however, chronic illness is not and I have no immediate plans as regards dying.
For now, my most immediate course of action is to carry on living as usual, and what is to happen will be addressed as it so chooses to happen. I am just as angry, spiteful, vindictive, childish and lustful about life as before. If it is true that “tout comprendre, c’est tout pardonner” then there is much more that I have to learn, and would be very grateful of the time in which to do so.
Your outlook on life is admirable. I wish you well.
Gods. Here’s hoping that the thing progresses slowly, if at all. I recognize that feeling one gets when bad news arrives, but the world rudely keeps right on spinning.
I am sending you all the love in the world after reading this but also hope and cheer. My experience was like yours when I was 21 and pregnant with my second child.She is old enough to have her own teenagers now.I am still working,writing and planning for the future.There are definate ups and downs and everyones journey is different but I am more than happy to share yours if it helps.xxx
This is a horrible shock for you, but remember this is only one opinion, and conventional British medicine does have severe limitations, especially with chronic conditions. I think it might be worth your while exploring Dr Mercola’s website. He is a US medical doctor who keeps on top of all current research by talking to medical researchers, and discussing their findings on his website. http://www.mercola.com/ He is a fervent believer in putting the power back into the patient’s domain. Good luck.
I am dealing with chronic illness of a different sort. Reading this helped me a lot today, so thank you for your wonderful writing.
My thoughts are with you.
Mine too.
Keep doing what you do. I like the article. It made me recall the one I wrote after being diagnosed with MS. If you like, I’d key it to my blog for an entry. Vitamin D and B12 do help. I have been lucky to fair very well over 16 years but attribute it to the same things as any other healthy person – rest, exercise (get strong!), faith and a positive attitude. Mine is the same as my blood type – B positive! Sounds like you are – – – good luck to you.
Hello, my very best wishes to you. Particularly under the circumstances, a very well written post showing abilities that will stand you in good stead. Phil
I wish you well, your positive words are inspiring, keep taking it on one day at a time and look after yourself.
my brother was diagnosed with MS back in 2010, when he was 25, and originally had relapses that were 1-1.5 years apart – the last one was bad as it hit his balance center so he was tied to bed for quite a while… BUT we were lucky enough to learn first-hand from someone who hasn’t had a single relapse for over a decade just how important the person’s lifestyle is (and remember, we’re all different).
we are originally from Europe as well but since I live in Thailand, I brought my brother here a year ago… it was tough at first, he still had strong vertigo and was extremely weak overall, I worked at two jobs to support us, but, over time, he got SO much better – to the point of family and friends back home believing it is a miracle; he now has a part-time job and lives a normal life, feeling and seeming better than in a really long time. my guess is that the climate really suits him – as opposed to 4 seasons – as he is able to stay active all year long through swimming, cycling and paddleboarding. we are still actively trying out different nerve treatments (he enjoys chiropractic ones but while they bring relief, they never quite change things) and we have recently stumbled upon a spine expert who has just asked to see his X-ray…
we are also exploring dietary regimen through something that is called the human design system – while it’s not here to help you deal with MS per se, it can be a fascinating aid with observing your own being and some of the genetic make-up you carry, as it is all inter-connected.
the news you have found yourself in is overwhelming but once the shock passes it would be a good opportunity for you to take a good look at yourself and your life; perhaps you could have some good chats with people who know you and love you about your weaknesses (my brother has always been prone to depression and bitterness – that is, until he finally regained his strength and confidence less than a year ago). don’t be afraid to make lifestyle changes as you go along and discover what does and doesn’t suit you in your current circumstances – and don’t let anyone convince you that ending up in a wheelchair is what inevitably happens; we shall all see about that…
good luck & feel free to get in touch if you’d like more info – my brother can also share his experience with vitamins/treatments and such with you!
Wow. That’s horrible news. I admire your very reasonable reaction to it, though. I’m not sure how any of us would react to news like this unless we’re put in that situation. Best of luck to you as you move forward.
Thank you for following me. I was diagnosed 3 years ago but have been living with MS for over a decade. I’m curious, didn’t they tell you about medication options? As soon as I was diagnosed and had all tests and blood work done, I immediately started on Avonex. Hope you take good care of yourself.
That is odd. Yes, I too was presented with medications right off the bat. I chose not to take them though and to focus on the cause. Hope you find healing.
Thank you for the follow. Please be sure to subscribe to my official blog at my website http://www.thrivingwell4life.com.
I can help you if you need help. I would be honored to tell you my story. When I was diagnosed back in 2003 I was only 23 and by the time they found it I was in advanced stages of MS. I have never taken any of the meds and I have nothing more than flares when I am stressed, sick, or eat certain foods. You CAN do this. Your positive outlook will pull you through. This is one of my expertise as a Integrative Health Coach and my health issues actually led me to where I am in my career journey. B12 and D3 is essential and I swear by it since 2003. Besides, I am too stubborn to ever be in a wheelchair. 😉 That was what I was told the day the results came back in May of 03. I was told I would never walk again and would be in a wheelchair in three weeks or less. I didn’t have time for that! I still don’t have time for that. I may have MS among other issues but it doesn’t have me.
Me neither. I don’t take meds for the lesions and have not had a relapse. I try to eat only foods that are not processed and use only certain products. Congratulations on your health!
You’l be fine. Most MS can be controlled via diet, I’ve been doing it for the last 7 years. No relapses. If you need help let me know!
Amen! That’s such a wonderful inspiration. I am trying non-processed foods and product elimination but you’ve done it a lot longer! Great testimony.
I pray for your healing!
Hi. After reading this, I went on a binge and did some research on MS. I really admire how you’re taking all of this in. I hope all the meds and treatments they have for you will enable you to go on doing what you do without too many inconvenience.
I visit your blog for the first time and read this! Quite a change from humorous sandwich boards. I wish you many creative years ahead and admire the reflective “witness” in you that continues this strange journey that is life. Beaming you lots of positive energy!
I remember my diagnosis vividly, as I just laughed and caused the doctor to look at me with a face that could only be described as pure confusion. It didn’t change the man I was – just brought certainty to know what ails this ragged body of mine.
Your attitude seems to be some of the best I’ve seen, you keep smiling and being positive and all the best for you in the future!
I was diagnosed 10 years ago, there was just as much medical uncertainty then as now. I found ‘just get on with it’ as viable a strategy as anything else on offer for what is inherently an uncertain prognosis… Really, it’s just a presence you have to be aware of and put up with and deal with as and when, like anything else in a life. Best wishes to you, your positivity is a great step to stand on.
You capture the turmoil in your mind very poignantly. I am sorry you’ve acquired such a subject to stir such thoughts, but I admire the courage and resolve you express.
I’m so sorry to hear about your diagnosis. Your post title however is pretty amazing, funny and irreverent and I also think, defiant.
No plans on dying indeed. Diet can help, I hear, but I’m not one to believe in magical cure-alls. But take good care of yourself in every way you can, including finding people to positively support you.
MS is a tricky bastard but my hope for you is mild with minimal or no episodes.
My husbands mother has it and hasn’t had an episode in years. My own mother wasn’t so fortunate, BUT she was diagnosed in the late 1980s and now they know so much more.
Good luck to you,
Dana
I wish you luck, and stamina against the good intentions of strangers and loved ones. You’re in for interesting times, but between the new therapies and all the discoveries they keep making, perhaps not as many as you’re looking forward to…
Autoimmune disease is something that runs deep in both my family and my boyfriends’ family. His mother has nearly been diagonsed with MS multiple times, but they always dance around it and decide it’s something else (formic acid deficiency, anemia, fibromyalgia…) Altogether, MS is an incredibly unpredictable disease. It can behave as aggressively as ALS or as sporadically as a cold sore. I do hope your symptoms are as easy as possible, and that medical science advances to the point where no one has to suffer from this disease.
It may cheer you up slightly to know that you are a fabulous writer and you really have a unique voice, btw. I really couldn’t look away from the screen. Your words pull the reader right in.
Reblogged this on bertpowers.
May God bless you on your journey.
Best wishes and hugs 🙂
Take care of yourself…enjoy every moment…life is what you make it no matter what life throws at us. Thank you for being brave enough to share this challenging and difficult journey. Blessings and good fortune as you go forward.
I’d like to say it will get better, but I hate to lie, I live with a body best with numerous chronic ailments none of which will improve with time or age. I struggle with them daily knowing in the end we are all terminal, some of us just have more accelerated time lines. Do what you can while you can. It is all any of us can do anyway.
Sending all my well wishes! Thanks for sharing your story. x
Richard, this was not pleasant to hear about, to say the least, because suffering with chronic illness is not fun. I know because I do. Your attitude is perfect—don’t dwell or wallow and expect the “worse” things that may never happen. I’m sure you’ll hear different opinions AND avenues suggested as far as how to deal with this diagnosis. I’ll name a few, but first will reiterate what’s been said: lifestyle and nutrition are key. I know this from personal experience, too. I am guilty of slipping off the balancing beam more often than not, but when I AM going to bed earlier, eating well and doing some form of physical exercise, from stretching to my “basement bops” (http://2creativitycookbook.com/art-forms/performing-arts/dance/basement-bops/) I DO feel noticeable improvement overall.
The two things that come to mind as far as avenues to possibly look into would be in reference to heavy metal toxicity. Certainly mercury, but anything that could be creating problems (I’m mercury toxic).
Excellent book if you suspect mercury (I doubt you have amalgam fillings), or any kind of issues dental work could’ve caused (this is a possibility most people don’t consider, even without metals):
It’s All In Your Head by Hal Huggins
Links to excellent groups I belong to. I read all their posts for a year before purchasing Amalgam Illness (not just about mercury) and wish I’d purchased it sooner. Each group is connected and they all have valuable info:
The first link is for a general group who are chelating with Andy Cutler’s
protocol, or thinking of it. Other subjects get discussed too, along with MCS:
http://health.groups.yahoo.com/group/adult-metal-chelation/
This link is also for the Cutler protocol, but is set up for people actually
going through chelation with help through the process:
http://health.groups.yahoo.com/group/frequent-dose-chelation/
This is an autism group using Cutler’s protocol:
http://health.groups.yahoo.com/group/Autism-Mercury/
I don’t know if any of that will help, but at least it’s something else you may want to consider researching at some point. I also take Mannatech basic supplements and they help me immensely.
All I can say is, regardless of whether it’s due to health issues, financial issues, anything…it doesn’t help anyone to focus on what they can’t do…you focus on what you CAN do 🙂 And I think you have that under control 🙂 Of course, if you’re a praying man and believe in God, he can help you with the strength aspect of it. All you have to do is ask 🙂
Thank ypu for your kind words. I plan to live a long and healthy life, even if it kills me!
PERfect response! lol
Have you looked into lysolecithin as well? It is a cause of lesions and is in vaccines. I think many with autism would benefit from reading about how lysolecithin is in processed foods in unnatural amounts. Do they ever give autistic children MRIs?
I’m sorry to hear your diagnosis. Don’t let anything stop you, God bless.
wishing you strength . . .
Thank you for your post.
I don`t know if the following thing is “your thing”, but there seems to be a great deal of connection between food and disease. Fx., I keep hearing that the paleolithic diet is the diet that shaped the human, and this diet is being researched within the method of science for many years now, and I eat the diet myself. I have not had any diseases (yet!), but MS and diabetes often come up alongside this diet; it`s good for avoiding disease, and it`s great for curing diseases. And I talk about diseases where the western health system claims a cure is nowhere in sight.
Are we overlooking something?
I only understand what I experience. Where money (aka “physical currency”) is our most-used tool for survival, treatment is better than cure. It is centerpiece of the entire act that is us. As a collective that transforms us into what?
I hope you find your way to live in peace with the recent turns in your life, and I wish you well for the future.
Hi, carry on with your inner strength. May you continue to live a long and healthy life so that you can continue to share with us your heartfelt thoughts. Amen.
18 months ago a very close friend of mine was given the news the day after we celebrated her 40th birthday that she had ms. She has three little boys – ages 6, 4, and 2. They are wide open all the time so she has her hands full, too! So far, she is managing very well and I hope the same for you. Living with a chronic condition is not fun, but you will simply do the best you can. I wish you well from across the Pond.
Take care…hope you will be surrounded by lot’s of love on this tough journey.
Sending positive energy your way. Your attitude is admirable.
So here’s a ray of hope. The cause of lesions is lysolecithin and it’s in our processed foods and products. So hope you’ll come and rread about it at http://jesusdiedandlives.wordpress.com I started researching and this is what the Lord led me to.
Lots of love and hugs.
I clicked on your site to write a light-hearted “thank you” for following my blog — then I read this post, and adjust my tone. I deeply admire your response to the diagnosis, especially your observation that you are the same mix of characteristics that you were before. You are still you; you have not been reduced to a disease. Chapeau.
I am so sorry that you got this news and I really admire your attitude bless you , sending you lots of kind wishes , hugs and positive energy ; your lust for life is so prominent in the posts you write and this wonder and need to keep finding out more and more about life will far out weigh the negative news , I see you rising above it , I want you to rise above it with my heart. Kind Regards Kathy.
I want to say – What a great post – but it is and it isn’t……. meaning, the subject isn’t, of course. I am thankful for your follow and wishing you the best on your blogging journey and this new curve in the road of your life’s journey.
I look forward to getting to know you.
cate b
I also loved your response that you’d live a long and happy life even if it kills you. Perseverance and humor…can’t beat that. Inspiring. Thanks for following my blog that brought me here. I look forward to hearing from you in the new year. Have a great Christmas meanwhile.
That’s pretty shocking news. I am not sure what to say or what might help (if anything). I wish you all the best and the necessary strength to deal with it.
I am so sorry.
Your writing is amazing! Your positivity during these circumstances is inspiring as well. I wish you the best of luck and take care!
” I am just as angry, spiteful, vindictive, childish and lustful about life as before”
Please be and please do!
As no one on planet Earth can imagine what you imagine, no one can feel what you feel…
I wish you to learn more and to be ” I am just as angry, spiteful, vindictive, childish and lustful about life as before”…
😉 M
Reading your post has me kicking my own backside because I’m frustrated with the slow regrowth of my myelin sheaths post-GBS (Guillain-Barre Syndrome).
Keep strong mentally and emotionally – MS and myelin repair are being extensively researched and many therapies are being investigated: http://www.ms-uk.org/emergingtherapies
This is how I felt when I started to develop severe chronic stomach issues. I have been to so many doctors and have yet to be diagnosed with anything. I don’t know what else to say other than I very much appreciate your post. Thank you for sharing, and well written.
Words miss me to telle you how your message is moving … I wish life will give otherwise what she has taken of you.
I salute your spirit towards life. We’re with you, dear. I’m from another country but I feel very close to you. Live it till the end and dare you stop till you drop 🙂
Happy new year and keep rocking, superman ! 🙂 god bless you 🙂
Reblogged this on Abbie's Corner of the World and commented:
Believe me, reading this post will make you thankful for good health.
Wow, that was certainly a bitter pill to swallow. I think your positive attitude and approach to handling things as the come is the best response. Hang in there and know that those halfway around the world are pulling for you.
I have MS also and thank you for sharing the way you were told! The good news is there is alot of help and support available if you wish to seek it. Staying Positive Helps! But also listening to your body by resting when you need, regular exercise and simply doing whatever makes you happy and feel good ((as long as it does not involve any lawbreaking…??)) Its true as mentioned it effects everyone differently depending on what stage or type of MS you have….
Also my advice is to seek a 2nd or 3rd opinion and get a definite diagnosis in writing… words like ‘indicates, maybe, indicative, probable and likely’ allows the medical practitioners space and scope for misdiagnosis… sadly.
(long n short I was treated for years and misdiagnosed with letters saying ‘may have & indicates Menhiers disease’) only to have a letter stating ‘definite’ MS and a sincere apology years later…by then too late for many of the treatments & therapies that DO work to keep you healthy and replapse free for as long as possible!
Chronic illnes can be difficult to diagnose as many mimic MS and you want to be getting on with life as best you can while you can – with the correct treatment!
I think your attitude is great and you will inspire others by living as best you can regardless!!!
Thanks for sharing & I wish you more wellness, vitality and nuff good health!
Jill x
Oh yeah…thanks for following my blog also!!
Keep strong my friend. xxx
How are you doing , miss your posts, wishing you lots of good wishes.
Kind Regards Kathy
It’s a shitter isn’t it. Meh..worse things happen at sea, I’m 41 and got it when I was 18. Still not piddling myself or dribbling.
How very British sounding you are! 🙂 Analytical and sarcastic at the same time. Best wishes.
I love your honesty and approach – here’s hoping it doesn’t manifest too soon or too often.
Wishing you well
You have a wonderful and strong spirit. I am sorry about the diagnosis, hoping you stay healthy for a very long time. Stay strong!
I’m sorry to hear about your diagnosis. I like your down to earth approach and wish you all the best in keeping it under control.
Wishing you Peace Hope Joy & Many Healing ((Hugs)) x
Thanks for sharing I am also in this thoroughly rubbish point of just being diagnosed, have no idea how to handle being on this roller coaster yet but it really helps reading what others are doing. All the best
This is just the best news of all to receive, isn’t it? I remember how my doctor told me, over the telephone, no less: “You have either M.S. or a brain tumor. You need to come back for some more tests.” By golly, I felt downright swell after those tests! One of them involved strapping me into a chair, blindfolding me, and spinning me around in a circle, while asking me confusing questions to see how long it took me to pass out. This was at the world-renowned Massachusetts Eye and Ear Hospital. It was peachy!
‘I asked for BBC Radio 4 – which is perhaps the most British thing conceivable, second only to post-empire lapsarian guilt and an innate inability to complain about poor service in restaurants…’
I admire your humour in the face of this diagnosis. Very best wishes to you in living with MS. I just found your blog here, after you were kind enough to find mine. You write on a wide variety of things with such flair… I will be a frequent visitor.
Another quintessentially British thing that you forgot to mention is inventing sports, and then seeing others play them better…you forgot that one. (-:
i’m actually touch of how strong you are in this kind of situation. :'(
I’ll pray for you to be healed both emotionally and physically.
May the odds be ever in your favor mate! 🙂
You have had a shock, I admire your attitude do keep it up. We are all dying , it is our lot. But you have just been slap in the face with it. I hope you continue to be well for a long long time. Do let any anger put because otherwise it will eat you up. Be well be happy. xx
First of all – my very best wishes! It is sort of difficult not to come up with something that sounds like a platitude, especially since I do not know her at all, so simply allow me to say this: I very dear friend of mine, whom I have know for years, is dealing with MS as well. Yes, she does have “attacks” that sometimes forces her into a whealchair. But she is a true fighter, always manages to get up again (literally) and has been doing quite well. She even is a stage performer now!
I have Lambert-Eaton Mysathenic Syndrome (LEMS), a cousin of MS. I was diagnosed four years ago after developing breast cancer. My oncologist recommended taking 2000 mg. of Vitamin D daily. Not sure this significantly helps. I find with the warmer weather coming in now, getting outside in the sun for 15-20 minutes can have the same affect. I get infusions every six weeks for this autoimmune disorder, probably the rest of my life. I realize after all this time, that there isn’t a cure, but I had hoped I would get better. I remain staying positive, praying and grateful to just be alive. 🙂
I like your writing. You have so much to say and you say it, and you say it well.
I’m new at writing and am trying to be brief in all I write. Your blog gives me permission to write with many words. Thanks. I hope you will continue to write your heart out, and find healing in the process. Stay in faith hope and love.