A5 My Autobiography of MS - September 2002 to April 2004

"All our dreams can come true, if we have the courage to pursue them"

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MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote as health diary they were originally written for different sites. There are some specific topics which are named rather than dated, these have been put in approximately when I was doing them / they occurred.

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018





Updates List

MY AUTOBIOGRAPHY OF MS

PART 5

Update- April 2004

Well, I think it is time for me to update you on the progress I have made in the right direction!


In -Part 3- I told you all about my Great Sheffield Abseil , off a 120 ft building to raise awareness about MS, and funds for MS-UK (formerly the MSRC). I also talked about my real life Abseil, climbing over the edge and venturing out on my own, on a path of reclaimed independence, both physically and financially i.e. coming of income support and working for a living. I had this goal in mind, but it wasn't up to me exactly when, or even if I would achieve it. That part I had to leave up to the Universe. I had to be pretty certain that the ropes were secure before I stepped over the edge and into the UNKNOWN.


I am happy to report that the Universe has allowed me to follow this path. I have succeeded in my goal of living an independent life, and becoming self-employed. Though most definitely not the easiest path to have taken, my heart told me to make this leap of faith and to date I have no regrets!


So, how did this all come about you may well ask? Well, I set the goal but really it was through grace, that I have managed to accomplish this goal. In January 2003, I found a Housing Estate just down the road which had a lovely feel to it. My fella, Steve the Scooterman, and I discussed the possibility of my moving into his flat in Millhouses, but I could not imagine moving from Upperthorpe, the area I ended up living in when life as I knew it, collapsed due to rapid MS progression. In a sense I really landed on my feet here, because I have everything I could possibly wish for on my doorstep; local shops, supermarket, local Upperthorpe Healthy Living Centre (with a swimming pool, aquagym, and gym with fantastic exercise equipment), local tram stop, all this and I'm not far from town! So ideally I did not really want to move away at all!


I introduced the possibility of buying a house on this estate to Steve, should one happen to come on the market, and, much to my amazement, he liked the idea!


So I kept driving down and around this estate on my mobility scooter to see if any house were to come up for sale. One day Steve said, "Let's go and see if there is a house for sale today!". I hadn't been for a couple of weeks, but I was still doubtful whether we'd get lucky, but Steve had one of his "feelings" that week, so we went off to check! And there it was, a lovely little 3 bedroom house for sale. It even had a palm-tree in the garden (a mini Florida!).


We went around to view it and Steve was confident that the house would become ours if we wanted it. The present owner was a Sheffield Wednesday fan, and so was Steve, so they hit it off well. Together, pooling finances, we found we could afford to make an offer, and here is the best bit; the reason that we could afford to buy this house was largely due to the success of the mobility scooters Internet business I ran for Steve! I'd ended up doubling his sales. Again, no one could really have predicted that this would happen. I qualified in web design, I worked hard, I learnt on the job and did my best, but the rest was down to grace!


Steve played the game very strategically, and before I knew it, the house was to be ours! Suddenly this was all really happened and there was no way back! I was about to give up the security of my lovely little council bungalow, and at the same time come off income support and begin to earn my own keep! This was very daunting but, because we could afford to buy the house outright, I would end up with no mortgage so I only had to make enough money each week to pay the bills, pay my taxes and live off (I am quite frugal really; healthy food, supplements, a weekly curry and I am happy!). I felt this was realistic.


It was still a huge leap into unknown territory! It was a big commitment to Steve too, because if our relationship failed, then I could end up jobless and homeless! I weighed this all up and decided that if that did happen, I WOULD SURVIVE. The worst had already happened to me and I had come through, so if necessary, I could do it all again. I knew that it was the harder path, and I could end up paying a price with my health- in many ways it was crazy!-. But I also knew that if I didn't follow this path, I'd end up regretting it!


Maybe it was crazy, but being "crazy" had already brought me so far. I felt that such opportunities must have come my way for a reason! By following my nose, and striving forward in spite of adversity, I had achieved so much already. So with "faith" I decided to take yet another leap into the unknown! The Universe seemed to have provided a way to enable me to take the next natural step forward relatively easily (provided I kept my nerve!!!).


Moving house in July of last year was stressful, but I handled it well and got through. We did this over a four week period, so that we had time to adapt the new house so that I could live there in spite of my disability. We fixed up grab-rails, bought another wheelchair, and had a stairlift installed! Before I knew it I'd moved, come off income support and was settling in!

Steve carried on running the Fair Price Mobility from his flat, and was around at weekends. We have plans to convert the garage into a downstairs office for me, with a downstairs toilet, so that, if he wanted, Steve could move in later, and run the business upstairs (this has not actually happened yet- once a bachelor always a bachelor - but that suits me too!). I am working up stairs for the moment (close to the toilet) until we get all that organised. We bought a commode for me to use downstairs for the time being! Steve is now talking about turning the garage into some kind of leisure room, which could be rather nice.


I now make enough money to live off through my Internet businesses: selling mobility scooters and mobility products through the Internet with Steve, renting out his Home in the Florida Keys through the Florida Keys webpage I built, and selling the odd CHI Machine and FIR Hothouse, through my Chi webpage.


I also turned the therapeutic work that I had started doing for the MS-UK, working on their webpage, into part-time work. This is not a lot of money, but it is a mainstay income to ensure that I have enough money to pay the bills and survive, should the other incomes dry-up! The work I do for the MS-UK though, is really a labour of love and a vocation. I feel very privileged to be part of their team, and involved in the invaluable work they do, helping, supporting and empowering people with MS throughout, not just the UK, but also the world!


I also managing to cook and organise my own meals with help from my partner Steve (real food, no ready made meals or short-cuts!), wash up and care for myself on the whole (I have good days and bad of course!). Sometimes I wonder quite how I manage to do all that I now do. It is a real balancing act at times, and sometimes, I think I have taken on too much, but somehow I seem to cope. I must have become quite durable in my old age ( I'm 30 now). I have also learnt how to ask for help if I do need it, and Steve is a rather well-trained husband. He cleans, vacuums and cooks meals as if they were made in heaven! (all good healthy foods too!).


As a result of moving forward with my life and working for a living, I have had to give up my position running GYMS (my Group for Young MSers), in January of this year after running it for 3.5 years. However, thankfully a girl called Julie has come to GYM's rescue and is planning to continue running the Group and organising meetings!


In September, 2002, I started taking the drug Low Dose Naltrexone (supplied by Dr. Bob Lawrence, a very wise Doctor, who himself has MS), and it did appear to do me some good. I felt that I could, walk further and stand for longer, and be functional for longer periods. However, in the Autumn of 2003, I did become considerably weaker. My mobility deteriorated and my legs dragged more frequently again. The Autumn is generally not a very good time for me. I believe this could be due to all the bugs flying about, and my low-immunity at that time of year.


I was disappointed that LDN did not prevent this slight worsening in symptoms, but I continued to take it till the end of the year. Steve and I spent 8 weeks in the US, 6 weeks of which we spent in the Florida Keys. This was my fifth trip over there, and I did a fair amount of sunbathing, a lot of swimming in the pool, and some work each day. All this helped to pick me up again. I was very disciplined and most determined.


In January and February of this year I came off the LDN drug and seemed to do pretty well without it. I also discovered, thanks to Susie Cornell's exercise video, that NEGLECT due to set-backs, and sitting at the computer working for long hours, had crept in. Certain muscles in my legs, abdomen, and whole body has weakened, and I needed to start doing the gentle, stretching exercises every day, which Susie recommended, I realised that swimming intensely was not actually working these specific muscles, and was often too intense and was just wearing me out.


The effects of these specialised Physio type exercises was remarkable. It transformed my life back from a continual struggle, to being back on my feet a lot more of the time, with my legs lifting better, and I also found that I had to use my Stairlift far less.


In March 2003, I had a full MS Assessment at Susie's MS Clinic Under Pressure down in Chelmsford. This involved vega food allergy testing, nutritional assessment, a detox plan, and a Physio assessment with exercise recommendations, and was worth every penny.


I would advise anyone to go to have a consultation with Susie to assess their ms and how to best tackle treating it. She is very experienced in treating MS, and certainly knows her stuff. To visit Susie's webpage simply Click Here. To contact Susie directly either Tel. 01245 268 098 or Email: info@susiecornell.com


Since March 2004, I have started to take LDN once again, but I don't think that this drug is the be all and end all for me. I find that my dietary changes, supplements and vitamins, regular exercise, meditation and trying to get the balance right and rest enough, far more important. Other people with MS seems to have benefited more that me. I'm the type of person who would rather not take a drug, unless it is absolutely necessary, so I probably won't pursue this, and try to persuade my G.P. to prescribe it for me.


I do believe, however, that EVERY PERSON WITH MS SHOULD HAVE TO RIGHT TO TRY THIS DRUG AND DECIDE WHETHER IT HELPS THEM FOR THEMSELVES. I do believe that this drug will become licensed and available to treat people with MS on the NHS in the longer-term. The Campaign to make LDN available to people with MS, is gaining in strength and momentum all the time! The problem it seems with this drug, is that it is so cheap, that it is not worth a drug companies while to supply it. To sign the Petition and Support the campaign for Research & Trials in 'Low Dose Naltrexone for Multiple Sclerosis' Click Here.


Progress in moving the "MS & increased intestinal permeability" (or leaky gut) research proposal (which I put together) forward is slow. There are many barriers to surmount, and Dr Freed is doing his best to bring this work to fruition. Obtaining funding and creating interest in this field of research is, however, an uphill struggle.


We have been helped enormously, however, by a man called Alan Caldwell, who is now completely well thanks for the Best Bet Diet. He is so well in fact, that he took it upon himself to cycles some 1 000 miles from Seattle to San Francisco. In doing so, he managed to raise an amazing £1300 to help fund this research work. To read more about his amazing trip and outstanding achievement read from Page 28 of Issue 21 of New Pathways Magazine


What has also emerged from all these efforts, is that the UK Best Bet Diet Group (with the help of the MS-UK have invited Dr Ashton Embry over to the UK in June 2004, to give lectures at three locations around the country: London, Lancaster and Glasgow. He will be lecturing to both Doctors, Neurologists, MS nurses and other professionals who are interested, as well as (most importantly) to people with MS. This will help us to raise awareness about this nutritional approach to treating MS, which is proving effective for so many!


With respect to my health, it is as always in constant flux, and I have god patches and bad ones, good days and bad ones, However, overall the MS has not progressed in over 5 and a half years now, since the time I started the my supplemented dietary program (which I am forever fine-tuning), and I find that to be miraculous. I have gone from some 20 hours care a week and not being able to get out of bed on my own to a life of relative independence. I feel so lucky to have my life set-up such that my disability doesn't affect me to a great degree. I use my stairlift, wheelchairs and mobility scooters as and when I need them, and love to take a short-walk using my walker outside in the mornings after I have done my exercises! Having lived through a time when I could not walk at all I feel very lucky to have the freedom and ability to do this!


The other week, I even managed to walk some quarter of a mile down from my house to Safeway. OK the last part of this journey did take me forever, but I was so determined and I made it! I had contact all the way with Steve through a Walkie talkie, in case I got stuck, and then he drove to Safeway, and met me there. I did some triumphant shopping and then we drove home.


At this time (April 2004), I even have a 3-month G.P. referral to the newly opened Healthy Living Centre (Tel. 0114 270 2040), which is located just up the road from me. This means that I can use their facilities as often as I like for free! This includes the newly re-opened (refurbished) swimming pool, the Aquagym (which I have written about on my exercise page), and even the GYM, which has excellent, modern, state-of-the art machines. This is all ideal for me, because it means that I can do a little exercise often, rather than a lot (to get your money's worth) less often!


I still find it all remarkable just how lucky I really am. Yes, I get tired, have to dash to the loo frequently, and struggle to walk, but in spite of all this, I am living my life, working, and can get out independently, and have all these facilities on tap to help me to help myself!


I have recently started using this local GYM, and have been amazed to find just how many of the machines I am able to use, even the treadmill! OK, so it is set on a very slow pace but it is still a fantastic experience to walk on there for 5 whole minutes. What is even more remarkable is that I am given one to one help in every session from a lovely lady called Nicki. It is like having your own personal trainer, and all for free! How lucky does that make me? (Again!)


The MS-UK are encouraging all people with MS to set themselves their own personal marathon challenges. Just because we can't all run a real marathon doesn't mean we have to feel sorry for ourselves. We can make up our own marathon challenges, involving 26.2 of something or other. To read more about The MS-UK My Marathon Challenge see page 25 of edition 25 of new pathways Click Here.


Due to my progress on the Treadmill, in my usual indefatigable style I have decided to set myself my own personal Treadmill Marathon Challenge! I am going to try to walk on a treadmill at the local Gym at a speed of 0.7 mph for 26.2 minutes!


And here is the crunch! I really want to do my treadmill marathon without any breaks! That is my aim anyway! If this proves to be impossible because my legs stop working, then I think a break or two is acceptable, after all marathon runners do stop for drinks and small rests don't they!


I have been training for weeks and trying to build up the time I can last on the Treadmill. This will be a real Challenge for me! I do not know whether it is actually achievable, but if I don't manage it on my first attempt on Thursday the 27th of May, you can bet that I will try, try, try and try again until I do!

To read more about my challenge, visit http://www.justgiving.com/sylviesmarathon

I have been blown away by the response I have got already to my challenge. I have already raised over £1000 for the MS-UK which is fantastic, as they really do need every penny! All I have to do now is achieve what I have set out to do, and complete this mammoth challenge! I will do my best and I will be proud of every step I take!


I also continue to search for ways to improve my health and well-being! As a self-confessed health freak, I am forever reading and digesting articles (and writing articles and reviews for New Pathways magazine, produced by the MS-UK).


Sometimes I take two steps forwards and then three back, and four forward etc. It feels like a continual boxing match! I make progress, and enjoy a high, but then I take yet another blow and it takes the wind out of me. I sometimes wonder at these times how on earth I can possibly continue on. But in the end I have to get up and get back on again! Occasionally I get a break as the bell chimes signalling the end of the that round. This gives me a short-breather before it all starts again!


I think that this, to some extent, is the nature of living with any chronic illness. You do your best, and piece together many parts of the puzzle to try to build up a picture, but you can never seem to get the full picture. You can never fully understand it, and your truth of the moment will be forever changing, as you try your best to comprehend your reality. Part of the picture always seems to remain a mystery.


There are a couple of pieces of the ms jigsaw I have been following up in the last year or so, namely mercury detoxification, and the use of progesterone cream to balance my female hormones and also treat my MS. I have cut down of my consumption of fish, and have been following a mercury detoxification program (my mercury levels are still to high according to results of recent hair mineral analysis), set-up after a consultation with Miss Susie Cornell of www.susiecornell.com in Chelmsford, Essex.


I am experimenting with the use progesterone cream to try to regulate my periods, treat PMS, and balance my hormones to as to avoid ovarian cysts and cysts in the breasts. Reading Dr Lee's book 'What the Dr's may not tell you about the pre-menopause has been a fascinating and very revealing read, as has 'It's all in your head' by Dr Huggins, which reveals the truth about the link between mercury amalgams, mercury toxicity, and many an illness, including MS. I will report back to you any progress I make in fitting in these pieces on the jigsaw and improvements made in my health.


Back to business, I have recently build a new webpage selling Stairlifts, for our Stairlift man, Chris Green of Unicorn Stairlifts. I have recently launched this business and though it is proving difficult to get this page well-listed in the search engines, I am determined to make this business work for me as well as the mobility scooter page does. I have managed to sell one stairlift so far, and have managed to recoup some of my outgoing expenses, but all this is really another venture out into the unknown. I am really having to put my money where my mouth is with this new business but I am confident that, given time, and effort I will succeed. (2013 - To visit our current Stairlift Sales pages, I also created visit www.fairprice-mobility-scooters.co.uk/stairlifts


I have also recently invested in a lovely little health-giving sauna. It is called a FIR Hothouse and I find it very therapeutic, relaxing and luxurious! The Far Infra Red rays help detoxification of the body, and it helps warm up my poor old cold legs. I love it! It is the perfect companion to my dear Chi machine, which also relaxes, energises, exercises, promotes circulation, and importantly for me, stops my leg spasms. This is handy when my leg starts jumping about at night and prevents me from sleeping. The Chi machine calms down and stops these spasms, and relaxes me into a state conducive to sleep (occasionally I smoke a little bit of cannabis too if the spasm is particularly troublesome!).


This year I am also learning how to get the balance right better, in that I take a full hour after lunch to relax, rest, sleep, visualise, and meditate. I have found that playing Andrew Weil's Healing music, from his CD, 'Sound Mind, Sound Body', and many times this music and the vibrations transferred to me through this music, sends me into a wonderfully blissful state. I need this time of rest and relaxation!


Whilst over in the US this last autumn (2003) Steve and I flew over from the Florida Keys to Las Vegas and then also spent two weeks touring Nevada, Arizona and Utah in a Campervan. We experienced Las Vegas which was pretty wild. I scootered up and down the Strip there.


We then drove on via the Hoover Dam to see the Grande Canyon, which was impressive, majestic and beautiful beyond belief.

We then toured around all the neighbouring canyons in the next ten days: Petrified Forest, Chelley Canyon and the amazing Spider Rock, Monument Valley, Arches National Park and Delicate Arch, Goblin valley, Capital Reef, over moonlike terrain, and the tree-covered mountains of Dixie National Forest and finally onto the ultimate climax of our trip...Bryce Canyon.


Bryce Canyon was simply stunning beyond words. You could only gaze in wonder. I looked down on pink, orange, red and white rock formations that look like a mighty army of Chinese warriors and huge chess pieces.


You could look at this view for a thousand years and never tire of it's awesome beauty.

So inspite of MS and all that adversity I am one lucky lady, lucky in life, lucky in travel, and lucky in love! It is still a difficult life but it is a truly wonderful one with a real sense of happiness, adventure and destiny.


Good luck with your own personal journeys! Till the next time and the next chapter yet to be lived!     


LIVE YOUR LIFE & NEVER EVER GIVE UP! 


love Sylvie xxx

to read more about how I began Taking Control of MS.

Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=living with ms site - autobio 5

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018





Updates List