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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Unpublished articles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


Updates List

September 14, 2007

Hello from Mr & Mrs Wright

Another six months on and Marcus is now 23 months old and very gorgeous with it! Life this year has once again been a roller-coaster of survival. It isn't Marcus, as such, that is the difficulty now, as we have a good routine now in how I manage my day, and I get the rest on my Chi machine, which I need in the afternoons in order to revive and cope.

Like father, like son!!!

Tigga also has Marcus two days a week including one evening-overnight, and another weekday he is with his Grandparents and Uncle Coconut, so that gives me time for my own email/Internet business (I’m self-employed) and personal email, health-related research and time for therapies and swimming/aqua-gym, all of which are very important to me!

Marcus’s favourite place in the world at my parents house in the heart of his family.


Marcus out in the fresh-air with his Grandma


He loves being outdoors, meeting doggies, and seeing animals and wildlife, ponds (to throw pebbles in and feed the ducks), going to parks and basically being pretty much anywhere with his grandma!


Marcus playing the piano at Grandma's


Tigga lives at Steve’s flat and exchanges the babysitting for rent and another free trip to the Florida Keys this December, including this time several days up at Ordlando/ Disneyworld in the New Year, which she is very excited about (we all are!).

Tigga looks after Marcus primarily for the love of him (she calls him her little bruv), but we will ensure she is well paid-back for all her efforts as she HAS BEEN WORTH HER WEIGHT IN GOLD TO US THIS YEAR! She has just gone off to Leeds University now having got in this year, and she is studying nursing. We are all very excited and happy for her.


Marcus with his little girlfriend Kasey and his Tigga!


No one can replace her as a babysitter, as Marcus does so many things in the time he spends with her. His social schedule is very busy and he even has a 2 year old girlfriend called Kasey. But we will find an alternative child-care arrangement I’m sure. We’ll have to! I’m not keen on getting an au pair as they live-in and we have very little space in our home, but if it comes to it, we’ll do that. I have to be practical and, although next year, when Marcus turns 3, he will start nursery in the afternoons (I will have to just bite the bullet when it comes to the colds and bugs he will pick-up and bring into the house), I’d prefer not to go there just yet! I am sure that the right solution will turn up anyway.


Marcus playing in the back garden with his Grandad at my parent's house

I have plenty of options as thankfully we can afford to pay whatever necessary. In the 3 weeks after Tigga has gone and before we fly our to the Florida Keys (for 3 months), Tigga’s brother, who Marcus loves, will help us out (he also lives in Steve’s flat right now!). I was hoping that his girlfriend, Gabi, who is 17, would take over from Tigga, as she too has helped out this year, when Tigga was away in Corfu, and Marcus is actually in love with her, but she has split up with Tigga’s brother, and has also just got an office job, so she won’t be available now. I’d prefer someone like her, someone I trust and someone I know adores Marcus and that Marcus adores, but I am now looking an alternatives, such as local Mum’s who have kids already and who would find a bit of extra money very handy, or maybe a local child-minder. The main thing is that my boy is happy and comfortable with the person he is with (and not bringing me into contact with too many bugs just yet). For the time-being Tigga’s brother, Doolan (Chris) is helping us out with the childcare.For the time-being Tigga’s brother, Doolan (Chris) is helping us out with the childcare.


It has been all the colds and bugs this year that I have caught from Marcus, from baby-groups and generally from being rundown, that has been that major problem this year and have really set me back (after getting all that sunshine in the Autumn/Winter in the Florida Keys, and vitamin D, which suppresses the immune system, so is good for ms, we come back to England like complete wusses and seem to get every bug/cold going!!!). But I realise that this is part and parcel of having a child, and fundamentally, really, it is my low immunity that is the problem, so it is up to me to fix this (so I don’t come down with them!).

So I am going to have to look after myself even better, and take the time for therapies etc. I tried seeing a chiropractor this year in England, but that didn’t do me any good, so now I am getting back to basics, and last night, I had my first session of Reflexology, with Cecile, a lovely French lady, who runs Feet First, and she was brilliant. It was £30 for an hour, she came to my house, and it was very relaxing. I plan to have this therapy monthly and I am sure it will help boost my immune system, and improve my health, circulation and everything. Bottom line is I love this therapy anyway, so anything else is a bonus.

Marcus, Grandma and Grandad all worn out!


I am also going to find a way to get the drug Low Dose Naltrexone (LDN) again as well, as many people with ms, find it helps them, and it boosts the immune system and that is what I need. I did take it on and off for about one year, a few years a go, and I didn’t feel it made enough of a difference to me, to justify what it costs me to buy, but I wasn’t up against then, what I’m up against now, so I’d like to give it another go! It should help me ward off all these nasty bugs! That is my hope anyway!

Big chair.Big sleep!

Physically, I am worse with ms, but with all these bugs and colds, triggering my immune system to attack my nervous system, it is not at all surprising. I am just thankful that I am not significantly worse, in that I can still manage and lead a relatively independent live. My left hand and arm are a lot shakier at present, the vision in my left eye is somewhat blurry, and my legs are stiff making walking extremely difficult at present. Also my arms get a little stiff and weak towards the end of my cycle (yes, I have a cycle again now, it took 18 months after having Marcus before I got a period, but now I am on a 6 week cycle, my periods are heavier and I get quite bad PMS and feel bad with MS towards the end of my cycle as well, but I am glad to have periods again!

My body must be recovering from the shock of producing our beautiful boy, but I am being very careful now as I am not planning to repeat the experience in the near future! Marcus keeps dropping me hints though as he adores babies, but he is having to make do with friends' babies and a doll, baby Natasha, whome he loves.

I think producing a real baby sister Natasha for him right now would make life immensely difficult. It is a dream, but a dream too far. I am focused on getting through these years when Marcus is young right now. When he reaches school-age and if Steve is less busy with the business, then it might be a possibility, but I think it is unlikely. We are more than happy with the one we have got and very lucky to have him! I am continuing to focus on day-to-day survival and making it through, because I do not want for my ms to get any worse. It is difficult (sometimes beyond words) but I love the life I have. In so many ways, I am so blessed.


Apart from all the colds and bugs, it has been a great year in many ways. We went down to the MS-UK (was MSRC) reception at the London marathon in April so everyone got to meet the boy!

At the MS-UK (MSRC) reception at the London marathon with friends


We also met up with two very special and remarkable ladies, who have ms, along the way, Shirley and Jane, ladies we know from the Yoga for Health Foundation, as well as a carer of Shirley’s, Rosangla, who we were happy to see again. Not to forget seeing Jane’s amazing carer dog, Finn, who we adore and who remembered Steve from several years ago.


Me, Finn (carer doggie), Jane and Marcus, Shirley and her husband!


Everyone was thrilled to meet Marcus and he had a ball! We stayed with Judy Graham, another amazing lady with ms, author of several self-help ms books, and editor of New Pathways magazine, and she was very smitten with Marcus too. He particularly loved Napo the king-charles spaniel staying with them, and also throwing pebbles into her garden pond!

Marcus and Judy throwing pebbles into her garden pond.

The next weekend after this trip, Phillip, who has MS and comes from Oz (Philoz) who was over here with his daughter on a holiday came up North to see us. I know Phil off the MS-UK message board, and I met up with him for the first time at the MSRC marathon reception! Together we all made the trip up to Skipton to visit another dear friend, Charlie Gee, who also has ms but always has a smile on his face, doing his best and making the most of life in spite of adversity. We visited him and his wife Renee and had a lovely Saturday night take-away curry together and they were thrilled to meet Marcus as well. Considering my, Charlie's and Phil's lack of mobility, it was quite a result to get together, and all thanks to Steve, my wonderful fella!


Us together having a lovely curry at Charlie Gee's.

The next major event of the year was our wedding on July the 22nd, 2007. Though we had hoped to wed in the autumn in the Florida Keys, in the end I felt it was too much of a big ask to get my parents to fly over there for a holiday, bearing in mind my Dad in now 79, and since his major neck operation last year (for a skin melanoma), he has become a lot older, more forgetful, lives with considerable back-pain and is a lot less steady on his feet. He has had two falls this year, each time cutting his head and is far more fragile as a result. I decided the right thing to do was to marry in Sheffield.

Ideally I wanted to marry in our back garden, in between a life-size silver-back gorilla sculpture we have got, and a 9 foot Velociraptor dinosaur I had set my heart on buying! But as the ground where you marry has to be registered we decided to meet with the vicar at St Bart’s church just around the corner from us, where I sometimes take Marcus to a baby group! The church building is very modern with walls with panels of glass so it is very bright and a lot like being outside. So we met with the vicar, Martin Kilner, and got on very well with him and things went on from there. Martin was about to be ordained so he could do weddings, so we were to be his first wedding (apart from the one in which he married his wife!), so this made it extra special too!

We kept the wedding to a minimum of fuss, bother and expense. We invited close friends and family and then had a buffet back at our house after


The most expensive thing about the wedding was Steve’s gift to me, which was the 9 foot Velociraptor!!! When it arrived at our house a few days before our wedding, it was so enormous, I did wonder ‘Oh what on earth have I done!’. We had to take down our fence on one side to get it in but our neighbours were very good about that!


Marcus exploring the Velociraptor!

On the day of our wedding I went to a local hairdresser’s just up the road and near to the church and had my hair and make-up done specially, and my friend Jacqui Wilmshurst, a school friend from years back, met me there and we then went up to the church. Really the whole day went like a dream for a girl who never really dreamt about her wedding day.

My Mum played the piano before and after the service at the church and did a grand job making a beautifully decorated wedding cake. My Dad accompanied me down the aisle of the church with me driving my mobility scooter, entirely suitable when you think I was marrying the man who first sold one to me some 8 years ago, my very own scooterman!

Marcus putting peddles in the mouth of the silver-back gorilla in our garden!

Marcus did a great job as best-man wearing his dungarees. He really made the wedding very special, especially when he came into the church at the exact moment that Martin asked if ‘any persons here present knew of any lawful reason why Sylvia and Steve may not be wed’. He came running right up to us babbling away and I think he was giving us his blessing. He also made everyone laugh when he started dancing right at the front of the church to one of the tracks we had chosen, Thank you by Led Zeppilin.(We chose music tracks to play that has special meaning to us instead of having hymns).

Afterwards Steve and I enjoyed a drive about town in our 1960 Buick Riviera with white and blue ribbons on, and a Just Married sign hung on the back. My brother also made tin cans all tied together and decorated up to hang on the back of my scooter with Marcus and Grandma’s help of course.


Me, my brother Matthew (Uncle Coconut) and our 1960 Buick Riviera

Back at the house the local paper photographer turned up to take photos of us with the Volociraptor, and the icing on the cake was that Calendar news phoned later that day and arranged to come and interview us the next day. They filmed us in the garden playing with Marcus, then they interviewed us separately, and they took our wedding video away to us.

So our wedding made the main story on Calendar news on the Sunday teatime. The angle was that miracle baby Marcus was best man at our wedding and it was an update of us all really, a happy wedding day story. They even flashed back to the footage when Marcus was a newborn and they cut-in scenes of our wedding from our wedding video which my brother had done for us, and the whole event was beautifully covered.

So what with this, with having the Buick Riviera as our wedding car, being Martin’s first wedding and also having the Volociraptor dinosaur in our garden, bought to mark the occasion of our wedding, both Steve and I are glad we got married over here in this way. I was keen for close friends and family to be there anyway, but it was quite a compromise for Steve to give up on getting married in the Florida Keys, but even he says he’s glad we did it this way, and he has proved himself a great man for agreeing to doing it this way in the first place in spite of a few reservations! So I am thrilled that he now feels this way!


Two generations: Mr and Mrs Brown, (my parents) and Mr and Mrs Wright (Steve and I).

In August we flew off to Berlin in Germany for 4 nights. I wanted to visit our great family friend, Marie-Luise and her Turkish friend, Melek and for then to get to meet Marcus. I love Berlin anyway and wanted to take Marcus to Berlin Zoo.


Marcus enjoying Berlin Zoo


The icing on the cake with this trip is that my good Norwegian friend, Ann-Cathrin, made the trip from Norway too, so we met with her in Berlin too and she got to meet the boy as well! We also enjoyed meeting Melek’s family and her new husband! They were all fantastic people'

The trip was fantastic and Marcus loved the zoo, especially the "kinder-zoo" where he petted and fed the goats. He also loved meeting everyone and everyone loved him.

Marie-Luise, Melek and family, Ann-Cathrin and us in Berlin Zoo

We went on a nice boat trip around the City and saw the sights, and on the final day I enjoyed a wonderful massage with a homeopathic Doctor, Dr Dirk Zifer, which Marie-Luise treated me to. It was very relaxing.


Us on the boat cruise

This week we have just returned from a weekend away visiting my good school friend Julia in Ross-on-Wye and enjoying a great BBQ there, then staying overnight in the Travelodge in Monmouth, and travelling down to my Grandad’s in Curry Rivel near Taunton in Somerset. So Grandpa (well Marcus’s 96 year old Great Grandad) got to meet Marcus and they got on very well. Grandad was amazing in that he didn’t get tired while we were there, and didn’t even need a rest (unlike me and Steve). Marcus enjoyed exploring the back garden and putting flowers into a big metal bucket and telling Grandpa to pick it up and bring in into the house etc.

We ordered a take-away curry in and it was delicious and Steve even gave Grandad’s mobility scooter a thorough service!


Marcus with his 96 year old great-grandpa!

It was a big thing for Steve to travel so far on a weekend, in his so called spare time, especially with the traffic and the difficulty we had in finding the Travelodge, which was on a Motorway Services and had no real address, but he did it for us and for that I am very grateful. The BBQ, the curry and the full English breakfast he had at the B&B before we travelled home, did help. We stayed on the Sunday night at Ednehurst B&B, in Curry Rivel, where we have stayed before and it is run by a lovely couple, Marina and Tony Greenway. They treat all their Guests like Royalty and Marcus thought they were the dog watsits too! I enjoyed cups of green tea and a lovely fruit salad for breakfast so I was happy too!


Marcus reading a book with his Grandad

In 4 weeks we fly off to the sunny Florida Keys, this time for 3 months and I can’t wait. Though I have tried to keep up with swimming and going to the Gym this year, it hasn’t always been possible. When I do go now I don’t do very much but it wipes me out completely so it is not very practical. I went last night though and went on the aquagym, managed to get my legs working eventually, and then did 12 lengths, so I am pleased about that.

Marcus having a big laugh playing with his Uncle Coconut and a big traffic cone!

It is important that I exercise as I do believe in the philosophy of use it or lose it, and I want to strengthen my arms as well as improve my legs, but with all the bugs and colds it hasn’t always been possible. I need to do more stretching and yoga type exercises again, which help. I do try to do some everyday, but I want to do more, and though a bit more complicated with a toddler, it’s not impossible. If I lie down he does like to throw himself down on top of me, but that is good fun anyway!!! I’ll just have to teach him to do Yoga with me! Simple breathing and relaxation exercises are also important, and often in the midst of everything, we forget the basics like how to breath properly.


Marcus with his grandma, playing wheelbarrow


We celebrated Marcus’s 2nd Birthday, one month early, so he could have a party with his friends Kasey and Malik and of course his family (as on his real 2nd Birthday we will be away in the Florida Keys). Marcus really enjoyed himself and it was a great 23 month old Birthday celebration.

Kasey, Marcus and Malik in the bath tub!

Even though the future is daunting I am very determined to survive and come through this roller-coaster journey life has taken me on in becoming a Mum. It is an incredibly difficult journey at times, but incredibly rich and beautiful as well. I am doing my best and so is Steve, we are happily married and Marcus is one very lucky boy! He has parent who love him, a very unique Daddy, a remarkable Mummy, a very special babysitter, Tigga, girlfriends galore (the local girls still help me out!), wonderful Grandparents/Uncle Coconut, and a very full and happy life! All that and Teletubbies! Isn’t life great!!!

This page was originally posted on the health diaries site, it is still there but also been posted here in case that site disappears, below are the comments that are posted there in response to my diary blog.

Lovely to read this and 'catch up', Sylvie. You really are remarkable. Congrats on your wedding. Marcus is totally and utterly gorgeous, too.

1. Posted by Maggie on September 14, 2007

Yes - life is great! You're living proof of that.

Love to all,

Eiona x

2. Posted by Eiona Roberts on September 14, 2007

Congratulations Sylvie! So good to see life being lived to the fullest - a beautiful, growing boy, a beautiful wedding and generations of family enjoying life and love together.

You are showing the world that there really is "Life After MS"!

Love, smiles and God Bless,
Patricia

3. Posted by Patricia on October 8, 2007

hi Sylvia tried to email you recently but don’t think it sent. its john here so good to see your doing well but upsetting to hear of the ms although you seem happier than most people i know! congratulations on having Marcus he’s a lovely boy. i do hope you remember the good times we shared together- oh to be 17 again! (i know u were 19! speak soon. j

4. Posted by john shipman on October 11, 2007

Just found this whilst browsing the net seeing if i could catch up with people i had lost touch with. You are an inspiration - in spite of all the difficulties life has thrown at you you still manage to achieve so much and have such a positive outlook. It seems like such a long time ago since we were at Uni together. Marcus looks like a real star - i loved the photos. Congratulations on your marriage - i love the car (much better than the boring white one i had for mine).

I hope you're are managing to fight of the bugs and beasties as the weather gets colder. There are so many about this year it seems.

Best wishes and God Bless

Eddie

5. Posted by Eddie on October 19, 2007

Thank you for your beautiful
story you have made old man a
very humble one.
As it is said there is always some one worse than off!
God Bless you and your caring
family
Take care, all my thoughts are
with you
Patrick Morris
PS.XXXXXX kisses for Marcus

6. Posted by Patrick Morris on March 7, 2008



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


Updates List