Update: September 2002
How time flies doesn't it. Where to start updating you! Well the good news is that I have had no bad urinary tract infections, or relapses since I last reported, that means no more antibiotics or, god forbid steroids!!! Hoorah! Though MS is still a pain in the backside (you know how it is!!!) and does fluctuate, I am improving very gradually, not in a running about like a "mad bint" kind of way, but more in the amount I can function and achieve on a daily basis. I am gaining in health overall and functionality. The trouble is I don't notice the change too much, because of all the fantastic opportunities coming my way which make life full, busy, rich, interesting and sometimes even a bit too much! I am doing so much more that I don't always see the big picture.
The best thing is the EMPOWERMENT I get from the realisation that it is I, little me, that has made every amazing event happen, through focus, determination and sheer Will Power above all else I think. When you look back you can see how far you have come. I call it a "difficult but remarkable life" and now I can honestly say that Multiple Sclerosis has become a mixed Blessing in my Life. I have MS true enough, but MS didn't happen 'to me', it happened 'within me'. What do I mean? Well there is a huge difference. If you think MS is happening 'to you', you are an 'MS Victim'. If MS is happening 'within you', then you take responsibility for it and YOU ARE ULTIMATELY IN CONTROL OF IT!
I don't even like to call myself an 'MS sufferer' anymore because this label does not express the the good, the opportunity for growth and learning, the opportunity for Triumph of Adversity, the opportunity for actually Improving your Quality of Life in many ways, in your relationships & friendships. The label 'MS sufferer' only expresses the struggle and hardship that can come with MS. You see for me now MS is both good and bad. Yes I would love for it to go away, to walk further, balance better, not to have to dash so frequently to the toilet and not to get as tired, but without MS I would not still be running GYMS (Group for Young MSers), be with the man I love, be in contact with such great and positive people through the Internet, or have such a rich and fulfilling life. The glass is more than half full and I am still searching for answers and learning and striving, and building my life, determined to top up the glass some more.
But it all takes time, and sometimes it feels like two steps forward, and three back, sometimes you even get knocked right off you feet but you get up, dust yourself down and then onward you go again. That's MS for you, like a very naughty child you can never quite control or comprehend fully, no matter how hard you try (and believe me I try!). I guess the answer is you have to try to love the MS, as you would a child throwing tantrums, getting mad with it certainly won't help anyway!
So what have I been up to? Well I finished my web design course at Croft House, and went on to set-up my partner's mobility scooter webpage (www.fairprice-mobility-scooters.co.uk). This has taken off so I have become my fella's greatest business asset! In October 2001 I started another course, this time a Dreamweaver Course, so as to learn how to build more professional webpages. This course, run by The Learning Library, cost me about £1 000, but I see this as an investment in my future, and one which is already paying off.
The course has been really interesting, and everything you need is supplied, six course books, and you can phone your tutor free during specified hours Mon-Fri, so I would recommend it. You work from home, in your own time and at your own pace, which is ideal. At the end of the course you receive, a Diploma in Webdesign from the The Association of Certified IT Professionals (ACITP) and an accredited Dreamweaver Qualification.
You also get a Certificate of Achievement from the Learning Library and automatically become a student Member of the ACITP.The books are very well set out, teaching you and guiding you through the Dreamweaver Application step by step. I am now very close to completing this course and for my Final Assignment I have built a "all singing and dancing" webpage about "Our Home in the Florida Keys" and all that the Florida Keys has to offer Holidaymakers.
This page can be found at:
In the Autumn of 2001 Steve and I returned to the Florida Keys for a well earned break, and this time we also travelled up to Orlando and went to Disneyworld. We visited the Magic Kingdom, the Animal Kingdom, MGM Studios, Universal and loved Seaworld and the Epcot Centre the Best. We also travelled across to Cape Canaveral and visited the Kennedy Space Centre, where we touched Moon rock, and then met an Astronaut John Bride. Back in the Keys we did plenty of sunbathing and swimming, and even went up in a four-man airplane and I ended up flying it! You can read more about our Holiday Adventures in the Keys on the Florida Page
In February 2002 I started a Photoshop course called S.O.L.O (Student Online Learning Project), this time about 3 hours a week for 10 weeks, and run my Manchester School of Arts & Technology. This course cost next to nothing, and was brilliant. You worked from Home in your own time and it was all run through the internet. You received a CD with each weeks lessons on it in Quicktime Movie Format. So each week you watched the Movie, worked through your assignments until you completed it and them posted it off Jeannie, our superb Tutor as an email attachment. I learnt so much every single week and this knowledge has been invaluable to me. I completed this course successfully and received my Introduction to Adobe Photoshop Certificate (1 credit at level 2).
I have also become more and more involved wih MS-UK (formerly The MSRC), and I write regularly for their fantastic MS Magazine, New Pathways. In fact I am about the start part-time 'Therapeutic Work' for them, working on their great new webpage now www.ms-uk.org. The people at the MS-UK are remarkable, and I am thrilled to be a part of their Team. We have the common Aim and that is to make the webpage the best Multiple Sclerosis webpage in the whole world. These people have a Vision and get on HELPING PEOPLE WITH MS TO FIND ANSWERS AND HELP THEMSELVES, A VISION I SHARE, AND ONE I LIVE AND BREATH FOR.
MY 120FT ABSEIL
My latest Ambition was achieved on the 21st of July 2002. I did a 120 ft Abseil off the Hotel Bristol by the Victoria Quays, near the Centre of Sheffield, to raise funds for my Young MS Group and the Multiple Sclerosis Resource Centre, the charity which sponsors GYMS. THE EXPERIENCE WAS AWESOME. I loved every minute of it. My limited mobility and severe lack of balance did not stop me-thank God!
The Abseil was organised through a company called Skyline, and you had to commit to raising a minimum of £145. Skyline take cut, but at least £100 goes directly to the Charity of your choice. All the Charity has to do is register with Skyline, if they haven't already. For further information about all the Charity Fundraising Stunts you can take part in through Skyline Click Here. Skyline were very competent and organised everything with the utmost safety. They looked after me in particular with view to my Disability, and I even had an Instructor going down on a second rope by my side, just in case I needed any extra support. This was very reassuring. The scariest part was actually leaning backwards over the edge at the very top and gradually releasing yourself down on your rope. You practised this at the bottom of the building first in training but the real thing was just TOTALLY MAD!
Of course they do have you held on another rope from the top, so you are perfectly secure even if you did lose the plot and let go, unlikely though that scenario is. So I lent back further and further until at about 80 degrees I was told to then step down over the overhang, which I did successfully, thank God!!! After that it all got easier. I hardly needed my legs at all, due to the overhang at the top. As I descended slowly I started to really enjoy the experience more and more, and look around at the view, which was fantastic. I didn't want the experience to end and my grin just got bigger and bigger.
At the bottom I was met with a big round of applause, and my wheelchair which I took one look at and said, "I don't need that". I walked off holding the barrier, full of energy. Talk about an Adrenalin Rush!
After this it was the rest of the MS-UK team's turn to Abseil, a team of six which I got together, and they were brilliant, very professional looking in their descent, but having spoken with them afterwards, most of them have confessed they were terrified. Yet I, the one with the added challenge of a disability, wasn't all that scared. But there is a reason for this. They were focusing on the fact that is was a really high building, yet my focus was simply on the concern that maybe I wouldn't be able to do the Abseil due to my limited Disability. So as soon as Skyline gave me the Thumbs up, I was raring to go.
Friends, family and fellow MSers have been fantastic in raising money and to date we have collected £1181.50. The other 5 have also raised at least another £500, so altogether that makes nearly £2000. Not bad seen as ALL I DID WAS CLIMB OFF A BUILDING, WHICH I WANTED TO DO ANYWAY TO PROVE TO MYSELF I COULD AND THAT DISABILITY REALLY DOESN'T HAVE TO STOP YOU!
Psychologically I got a huge boost from the Abseil with the feeling that I can achieve anything I set my mind to. It may take time, perseverance, and careful planning but you can get there in the end provided you are determined enough. It is important to set yourself Goals and keep them in your mind everyday, and persist and pursue them steadily and steadfastly until you gradually get where you want to go. I have been trying to organise such an Abseil for 18 months, and at times I thought it would Never Happen. Then out of the Blue it suddenly became possible and I made it happen. I just knew I wanted to do this though at times I freaked myself out with the idea as I wasn't at all sure it was physically possible. All I had was faith and a knowledge that I had to try and it all ended in a fantastic triumphant experience.
So the lesson is UNTIL YOU TRY YOU WILL NEVER KNOW and the ONLY FAILURE IS NOT TRYING. Sometimes all we have in a KNOWLEDGE IN OUR HEART THAT WE MUST FOLLOW THIS PATH AND A FAITH THAT ALL WILL BE WELL EVEN IF MEANS FOLLOWING THE MORE DIFFICULT PATH.
The reason I say all this now and see all this clearly, is because in my life, I see my Real Abseil as yet to come, in regaining my independence and taking responsibility for more and more aspects of my life. That is the Real Step into the Unknown and one which I am working towards now, building, planning and ensuring all the ropes and support systems are in place, in case I fall. It's no good leaping off a building out into the Unknown with no safety harness or ropes. That would be foolish and it all takes time to set-up and assume responsibility for letting yourself actually go over the Edge. So what steps am I taking? Well firstly I am gradually assuming more and more responsibility in running my own Home, though there are some obvious limitations, due to lack of balance and mobility. I am also starting the 'Therapeutic Work' with view to building up my working hours gradually over time. So it really is one step at a time, but with the ultimate goal of running my own Home, working from Home, earning my own keep and paying my own taxes, giving something back to the System that has been and is still there for me during my years of need.
This is definitely the more difficult path, just like the Abseil, and a real step into the Unknown and not without risk to my health. But I think it is a good Goal to have and important on many levels, though it is not for me to say exactly when I will finish this Abseil and plant my feet on solid ground once again.
The biggest Risk is that people may say, oh well she must be OK now and assume that I cannot have some of the Health Challenges that I live with day to day. Some people will say 'How dare you have a life, despite MS' and therefore claim you are lying about your problems. I have personal experience of this and it is most unpleasant. The Truth is that it is sheer Inner Strength that carries me though some very rough patches, and as a resourceful individual I find ways of managing my problems.
For instance I have a "Truly Amazing" little pot called a "Pipinette Potty", which enables me to go to the toilet when I desperately need to "Go, Go, Go" (my bladder waits for no one!), even in the middle of a crowded street. I slip in inside my jogging bottoms while stood up by my scooter, and wee into the little pot, which is just the right shape. Then I carefully extract the pot discretely, pop the lid on it and throw the wee down the nearest drain. OK I may get a few strange looks stood there like that but no one actually guesses and anyway I'm not behaving indecently so WHO CARES. Most people are far too busy going about their lives anyway. This little pot has FREED UP MY LIFE NO END, and makes the incontinence much more manageable. To read more about the Pipinette Pot click here
I have also just purchased a cordless phone, another practical device to enable me to visit the toilet in an emergency, whilst on the phone, as sometimes it is very awkward to break off the conversation abruptly. You can go very discretely so again, if the other person is non the wiser, who cares! This is another means to an end to save the hassle and embarrassment of explaining you have to go, or worse not making it!!!
My biggest danger I think it not taking heed of maybe the biggest lesson MS has to teach me, namely NOT KNOWING WHEN TO STOP and THINKING THE WHOLE WORLD REVOLVES AROUND DOING SOMETHING BY A CERTAIN TIME, when it simply does not. Inwardly I know that LIFE IS BIGGER THAN THAT, and there are MORE IMPORTANT THINGS, PRIMARILY YOUR OWN HEALTH AND WELL BEING.
But that is all too easy to forget at times, particularly when you are swept away with a fascinating project, or focused on a Goal you view as extremely important. In Theory I GET IT, but IN PRACTICE I often FORGET IT!!! (Don't we all?) It can be very frustrating to live with mental and physical fatigue for example, when you just want to get on with all kinds of things!!!
So those are my goals and that is my plan. What else has been happening?
Well I am a great believer in the "Best Bet Diet" in Helping many, many people with MS world-wide to stabilise their condition, improve or even Recover completely from MS (the earlier you start the better your chances are). As a result I have become heavily involved in the "Best Bet Diet" Publicity Team and taken on the Post of "Research Officer". I have contacted many University Academics to try to raise Awareness about MS & Diet as an all important and highly plausible Effective Disease Moderator. I got some very revealing replies, which tell a tale about the real reason MS & Dietary Research is not being carried out.
For further information on the Best Bet Diet visit the MS Diet Group Webpage.As I feel very strongly about the importance of getting the MS/Diet Research moving over here in the UK, I have set-up an online Petition is Support of the Campaign for MS Dietary Research. To sign view this Petition (petition now closed) Click Here.
I have also written two scientific and extensive Research Proposals looking specifically at the Field of "MS & the Leaky Gut". Such Research, if followed up could be invaluable in throwing light as to why Diet is helping so many people with MS worldwide.
The Theory as to how Diet appears to affect the onset and progression Of MS, put together by Dr. Ashton Embry, is highly plausible and a core component of this Theory revolves around the "Leaky Gut". That is why Research in this field is so crucial. My Research Proposals are an extension of Ashton Embry's work, to be found on MS-Direct's webpage, the Charity he has set-up to raise money for DIrect REsearch into the Cause and Treatment of MS. At long last, after many years, MS Direct have raised the $175 000 needed start carrying out the official, scientific "Best Bet Dietary Research Trials". To read more about MS-Direct and Ashton's work visit MS-Direct's Webpage.
It will be at least five years before the results of these Trials become available, so it is vital that we get Research happening over here in the UK moving too. In fact I feel it is all our Responsibilities to ensure this happens. For further info on the Dietary Research Publicity Campaign please phone 01506 495391
The MS Diet Group Publicity Team has succeeded in creating an interest in my Research Proposals, in particular Proposal 2, a possible PhD/ Masters, and I will be meeting with two Dr's in the near future with the AIM in all our MINDS of getting the PhD is this field happening. We will then need to secure funding but the potential is there. Who will carry out the Research work remains to be seen. I have the motivation but I am not sure it would be advisable to take on such a huge task at this point in my life. I couldn't realistically take Study on full-time at present and also feel I have other area I want to commit my Time and Energy on at present, such as Web Design and MS-UK webpage work.
Also having MS myself, could make this too much as I would probably get too involved personally (and don't PhD's take over your life enough anyway). It really needs, I feel, to be carried out my a student who can commit to it full-time, and who preferably does not have MS.
Anyway, in this "Living Story" I will let you know how things progress. Below I have written a further Health Update, which I hope you will find interesting, revealing and helpful!
In April 2001, I had various test carried out, (which I paid for privately), to give me some answers about the state of my gut's health and throw light on further steps I could take in my Journey to Wellness. I had a Leaky Gut Test (£50), a Comprehensive Digestive Stool Analysis (CDSA) (£170) and a Hair Mineral Analysis (£45) carried out.
I had these tests carried out through Health Interlink (Interlink House, Unit B Ashfordby Bus Park, Leicestershire, LE14 3JL. Tel. 01664 810 011). This is the UK Company which links directly with the Great Smokies Laboratory in the USA. The results of these tests were very revealing. I found that I have a moderately leaky gut, imbalanced gut flora, increased gut disbiosis, incomplete digestion of fats as well as moderate Candidiasis (Candida was detected as a "possible pathogen" in the stool samples). This came as no great surprise, having read up on the minimal amount of Research done on people with MS in this field. I hate to say this but as people with MS go, my results fitted the trends, making me a typical MS case (me typical!!!), hence my interest in pursuing further research in this field.
The Hair Mineral Analysis also revealed useful information. This showed up that my Mercury (Hg) levels are higher than Normal (very mysterious as I do not have mercury fillings, but again often indicated in MS. I vaguely do recall an accident with a mercury thermometer as a child however, so this may offer explanation?). I was also low in Magnesium (again an MS trend) as well as Manganese (which is supposed to help with balance) and Sulphur.
I went to see my Nutrition Consultant about these matters, and it was great to see him smile on his face as I climbed up the stairs to his office, as I had always seen him in the lounge downstairs previously. This time I went without a wheelchair!!!
He gave me extra Manganese, Magnesium amongst other things, and recommended taking MSM (methyl sulphonyl methane)-a natural form of Sulphur, which I was already taking. We discussed my anti-candida supplements and the diet I was to follow (not easy restricting fruit, including dried fruit, and fruit juice, and low in carbohydrates!). I have since tried to tackle the Candida using various supplements over time, such as Pau D'Arch tea, Grape Fruit Seed Extract, Caprylic Acid and Colloidal Silver, but not all at once. This alongside the diet, which I followed very strictly from Jan through till May this year (that was not easy!), appears to have eliminated the Candida. How can I be sure?
Well I can't be 100% but I have also tried Colonic Irrigation, and Jay my Colonic Therapist has confirmed that she can no longer see any more than normal (as you can see it coming out as while yucky stuff when the colon is being washed out). The Colonic Irrigation has not only been effective in resolving the Candida problem, but also it getting it all moving down there. When I first went I was so clogged up, I lost pounds. Now I am much better, with almost daily bowel movements. This is very important, as when I get constipated I seem to get a lot more tired, like everything has got stuck. Daily bowel movements are also healthy and they ensure my bladder empties fully at least once a day! This helps prevent Urinary Tract Infections. Constipation however makes you more susceptible to UTI's.
To read more about my experience with Colonic Irrigation, page 36 of issue 9 of New Pathways Click Here.
Or to read my article on Urinary Tract Infection Prevention Tips on Page 28 of issue 14 of new pathways Click Here.
I have continued to take Soopergrape (Grape Seed Extract) and swear by it, because when I come off this supplement I have felt worse more than once. It makes sense to take a powerful Super-antioxidant, such as Grape Seed, which it thought to help strengthen the Blood Brain Barrier and from Daniel it doesn't cost much and you get a lot. You get plenty of the stuff for your money, enough of a dose to really make a difference. To visit the Soopergrape webpage Click Here.
I have also discovered a wonderful supplement called MSM (Methyl Sulphonyl methane) - a natural form of sulphur, which seems to be great in all kinds of healing ways. It helps me with fatigue, in warming up my legs and re-dressing my Sulphur deficiency. It is also apparently helps to body eliminate the Mercury which is a good thing as my Hg levels are elevated. To read more about MSM on page 24 of issue 3 of New Pathways click here
I read, research and learn a lot all the time:
KNOWLEDGE IS AFTER ALL POWER IN THIS GAME!
I have also taken steps to Heal the Leaky Gut, through the anti-candida dietary programme as well as taking various supplements, including Acidophilus, and L-Glutamine in particular. I have also discovered a wonderful sweet supplement called FOS which you are allowed to take whilst following an anti-candida programme, and it is a real lifesaver. It tastes sweet like Candyfloss yet it is a starch found naturally in vegetables, particularly artichokes of all things. I have also started cooking Quinoa, which is also allowable, and is rather nice, sweetened with FOS with a little added cinnamon. FOS is available from most Health Foods. The brand I get is from Biocare. Alternatively you order some direct from Biocare by calling them on 0121 433 3727
Since June this year I have reintroduced more fruit into my diet again and feel good for it. This again confirms that the candida seems to be resolved (however I must remain vigilant, when candida plants down roots in the gut, it can hide away , you think it's gone, then, like "-I'LL BE BACK-" Arnie, it suddenly returns with avengeance)
One thing I love to eat in particular is frozen banana, which makes for a surprisingly delicious ice-cream substitute. Try it, I got this handy tip from Matthew Grace's Book 'A Way Out'. This book, which documents Matthew's remarkable "Journey to Wellness" from MS, comes as close to Truth about "Diet, Society and Eating as Nature Intended" as any book I have read to date.
I have picked up a few good pointers from this book, and am eating more raw food and less meat (particularly if it's not organic). I am also more into BLENDING & JUICING and prefer my food the less cooked the better. This is because cooked food causes me fatigue as it is heavy on the digestive system. Though I seem to be OK with lightly cooked veggies I am less inclined to eat stews and hotpots or thick soups.
To get a copy of this book visit Matthew Grace's webpage, but before you start reading be prepared for a shock or two. You may well never look at meat or dairy in the same light ever again!
Since June I have also, taking Matthew Grace's Dietary advise, given my body a good break from a lot of the supplements I have been taken. I tried taking Colloidal Plant minerals, as I believe that they are better absorbed (so less wasteful, so much get's eliminated in the urine!), and these seem to be suiting me. I am still taking Vitamin D3 (3000IU a day), as this is perfectly safe and much Research is showing this to be highly beneficial. For further information on Vitamin D3 and MS Click Here.
I am trying to eat more fruit and vegetables, preferably organic, and though I still take a fair few vitamin supplements, I now believe there it is better for the body to nutrients naturally, as this does not overload your organs. It makes sense to me anyway and at this point I feel my body is ready for this. At times of crisis however I do think there is a case to be made for taking a good number of vitamin tablets, or better still have vitamin infusions, so that they are more likely to get absorbed.
So I feel I have made progress in my personal journey, in Healing the Gut and re-dressing imbalances, which can in my opinion only help in stabilising MS. I have certainly made progress in avoiding bad UTI's and combating the fatigue which accompanies MS, though I do still have a long way to go, and no doubt a lot to learn.
The MS/Leaky Gut/Candida Research should help in furthering out understanding in the links between these problems and MS. It could for instance be argued that they are part of the cause of MS (that seems likely to me) or occur as a result of MS. Either way it is can only be advantageous to tackle and resolve them, especially many symptoms of MS and Leaky Gut Syndrome are the same. Until this Research is carried out, it is up to us to remain two steps ahead as it is much better to be safe than sorry.