"All our dreams can come true, if we have the courage to pursue them"
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 the health diary updates were originally written
for a different site than this one. There are some specific topics which are named
rather than dated, and these have been put in approximately when I was doing them
/ they occurred.
Motherhood with MS: Continuing the difficult but wondrous journey.
April 17, 2007
Well, it has been a good 6 months since I last updated you, and Marcus is now a happy,
lively and very clever toddler. The way a child develops, particularly from the age
of 1 year old, is amazing to witness. Marcus is harder work now in many ways (you
need eyes in the back of your head!), and he sleeps far less in the day now (only
the odd nap for half an hour or so) but like a log at night (that came with proper
solid food at around 10 month), but it has to be said,the journey from 1 year old
on, is far more interesting, entertaining and amazing!
Marcus, now 17 months old, is at a simply adorable age! I must admit he is ultra-cute
and very gorgeous but the main thing is that he is healthy and has a beautiful personality
to match his looks. He is very bright and a real charmer so we are very, very lucky
(with my only having a half-sized womb none of that could have been taken for granted).
He gets a bit cross if he is not allowed to do something (like press the button to
turn off the tele while we are watching it!) but he soon gets over his little upsets
including the bumps and little falls that all toddlers have, especially boys and
climbers like Marcus! Otherwise he is very placid, happy and such fun. He has such
a sense of humour like his Dad and totally ‘gets’ him! (and they look so similar
as well that often people joke that I’ve cloned Steve!).
Marcus with his Dad at Balti King, Broomhill, Sheffield
The best curry house in the world!
I know we have not yet reached the ‘terrible twos’ but I am not too worried about
this phase, and already, he knows when he has done wrong, and Steve is a strong male
role-model and won’t take any messing about. They are never too young to learn and
Marcus already learnt who was the boss very young age (in that if he is silly when
there is nothing wrong with him apart from being over-tired, he just gets ignored!)
I am enjoying this age that Marcus is at, and seeing him develop. It is a wondrous
journey! His first word was ”woof” (if you class that as a word!) in the Florida
Keys, when he heard and imitated a dog, when he was just over 1 year old. But his
first real word is “Bye, Bye”, which he has been saying for a few months now, and
he waves. He says it a lot, even when he has just met someone, so for Marcus it clearly
means ‘Hello’ as well! He also says ‘there’ when he hands something to you, and he
blows kisses, does peekaboo, putting his hands over his face them shouting ‘boo’
when he takes them away, and when we say ‘Tazan’ he cries out ‘Whhaaaaaaa’ with great
gusto, waving his arms around, and banging his chest. This he learnt after he handed
me his Tarzan video and I did it. After that he started doing it, much to our amazement,
whenever we said ‘Tarzan’.
Marcus at 'Art in the park'- he ended up in the local paper with a similar photo
to this one so proving our boy is himself a work of art (and his Daddy is a piece
of history, haha!).
He took his first real steps on the 21st of November, 2006 we know the exact date
because we were in the Florida Keys and on the phone to my brother, Matthew, (Uncle
Coconut) who was in S. America where he was travelling. Suddenly Marcus let go of
the kitchen cabinet he was holding, and stood there balancing on his own. I panicked
of course thinking he would fall over, and screamed for his Dad to step in and get
him, but Steve held back! He has a feeling that it was ok and he was right, for Marcus
then took his first two steps landing on my lap at my wheelchair. This was witnessed
by his Uncle Coconut in that he heard all the shrieking that them followed as we
hugged our little boy and congratulated him on being to clever.
We flew over to the Florida Keys on Marcus’s 1st Birthday as it happens (We’d celebrated
it the day before with his grandparents, friends, a nice cake and too many presents!).
Marcus was very good on the flight, apart from when he crawled down into 1st Class,
and his Daddy videoed him doing that before he retrieved him, which did not amuse
the air stewardess too much, who was quite literally stewing! (Ha ha!).
I had become pretty immobile and rundown by then, so it was a relief to have Steve
around and to have less to do apart from sunbathing and swimming. The year since
our Spring visit to the Florida Keys for the month of April had been a real roller-coaster
Marcus and his Mummy (and Tigger!)
in the Florida Keys in our holiday home
Thanks to the MSRC’s New Pathways magazine, I’d managed to buy a brilliant device
to help with the foot-drop in my left leg, which was causing me difficulties in walking
at all, as my left ankle just wouldn’t lift! The device is called a MuSmate (for
further information Click Here) and was invented by the husband of a lady, who has
MS. It is quite a simple contraption, though very cleverly designed. It is worn around
you shoulders, and straps to one or both legs with velcro (you can buy a single or
a double MuSmate). You look like a bungee jumper with it on, but it just helps to
lift that foot or feet up, so stopping them dragging and enabling you to walk.
It is brilliant, and of course the more you use the muscles, the more you improve.
It proved to be a life-saver on the aeroplane as it enabled me to walk the short
distance to the toilet, which made life a lot easier (OK, you can manage with pads
and nappies and such like, but I prefer not to have to. I only wear them as a back-up!).
After being in the Florida Keys, and swimming daily for 8 weeks (October 22nd to
December 12th, 2006) Steve and I went on a trip to South America for 2 and a half
weeks. We flew Marcus’s favourite babysitter out to the Florida Keys for the month
to look-after Marcus, so he was very happy and well looked after while we were away
(though that did not stop me worrying or missing him. What is it about Motherhood
that turns you so irrational? I felt like we were away from Marcus for an eternity!).
Marcus swimming with his friend Sammy in the Florida Keys
The trip has been planned thanks to my brother, Matthew's (Uncle Coconut’s) organisational
skills, through the Internet (Steve had been far too busy with Marcus, me and running
the business to get around to it, and I’d been far too busy just trying to survive!).
I’m not sure that I really believed that I would be well enough to go on this trip
but as per usual, I said yes and took the chance, as not many people get the opportunity
to travel to Angel Falls (in Venezuela), the Galapagos Islands (in Ecuador) and Easter
Island (off the coast of Chile) so I’d have been a fool not to!
However when we received news that Marcus’s No.1 babysitter, Tigga, was in hospital
with meningitis just two weeks before she was due to fly out to Florida, the trip
prospects didn’t look too good. However, thankfully the meningitis was bacterial
and was caught early enough (treated immediately with anti-biotics) so Tigga bounced
back really quickly and was fit and ready for a month in the sunshine by Saturday
the 10th of December, the day she arrived at Miami.
We drove up from the Keys to Miami to meet her at the airport, and visited the Everglades
on the way. However, at Miami airport, there was no sign of Tigga in arrivals, nor
at the spot we’d arranged to meet her as a back-up plan. This was very stressful,
especially when a lady who worked for American Airlines, whispered to me that Tigga
had not even been on the international flight from Manchester, and then disappeared!!!
Steve then came into the airport and made a few quick enquiries, and found out that
she had been on the flight after all, but was just on a later flight from Boston,
having missed the connecting flight (which made a lot more sense!). Anyway, she turned
up and I was so relieved to see her!!!
Marcus was very pleased as well, as he was getting rather fed-up of circling around
the area of Miami airport in the car with his Daddy. He was in mid-scream when she
got into the car, and he recognised her immediately and the scream turned into a
smile followed by much laughter as she greeted him with a tickle!
Marcus with Tigga, his No. 1. Babysitter
The next day we had to introduce Tigga to various people and settle her in very quickly,
because in the evening we had to drive back up to a hotel in Miami as we were taking
an early flight out to Caracas in Venezuela! It was a bit hectic and for me traumatic
leaving Marcus. Although I knew rationally he was in good care and would be well
looked after, I still couldn’t face the mere thought of leaving him.
Marcus wearing all the beads he collected at Fantasy Fest, Key West.
He was blissfully unaware of course, and he came to the door and waved us off quite
happily. As Steve (Mr Rational) said, Marcus was only interested in where his next
bit of entertainment and meal were coming from, and he was going to get plenty of
attention and care, especially as Tigga’s boyfriend, Matt was flying out later that
week for 10 days over Xmas!).
So they all had a great time, and once away on this trip, I was far too busy doing
it and surviving it (with 17 flights in 2 and a half weeks, and many early-morning
starts, ahhhhhhhh, it was intense!) to overly worry about Marcus (though I still
did and I missed him like mad, but I still only called 3 times over the 2 and a half
weeks which I think is pretty good for a mother of a 1 year old!). I just felt grateful
to be on the trip at all (with my trusty MuSmate to make getting to the toilet on
all the flights possible!) and surviving it was enough on it’s own to be honest.
I could never have handled having Marcus along with us as well!
At Angel Fall, I got the surprise of my life as Steve asked me to marry him! After
8 years together, a successful mobility scooter business a baby and MS, I had thought
he just wasn’t the marrying type and accepted that. However it turns out that he
had been planning to propose to “his angel” at Angel Falls for a few years, but the
whole trip just didn’t happen when Marcus came a long. He still kept up his training
in the Gym, so he could manage to carry me all the way up to the Falls!
It the event, however, he discovered that this would have been too difficult and
dangerous even for a team of men, as it was too far, too steep, too rocky and therefore
too dangerous. So after the 6 hour canoe ride (the canoe held about 12 people) to
get to the bottom of the climb up to the Falls, (we had a 4.30 am start that morning!),
I rested below in a lovely hammock in the jungle, and Steve set off to make the 3
hour climb up to the Falls, which he did it just 1 and a half hours leaving the rest
of the party miles behind! All that training paid off!). I saw the Falls from afar
when we pulled up in the boat down below, and I also saw then from an aeroplane on
a flight we took the next day so I didn’t miss out at all but I had no idea what
Steve was planning!
Despite his disappointment that he could not actually carry me up to the Falls, Steve
did the next best thing and videoed his marriage proposal to me, before he then went
to swim in the pool at the bottom of Angel Falls and enjoy it’s spray! We were lucky
as there was quite a lot of water coming off the Falls at the time we were there.
Sometimes there is hardly any! It is famous for being the tallest waterfall in he
world, being a mile high!
Steve videoing his marriage proposal to me at the foot of Angel Falls.
I had no idea what Steve had done until we got back to camp that evening and he played
me the video back. I was shocked, stunned, gob-smacked and speechless at seeing the
Falls up close and hearing Steve’s romantic proposal, but I did manage to say ‘Yes!’
and it was hard to keep a smile off my face for the rest of the trip.
Steve proposing again, this time in person, at the lake down on one knee.
And it was some trip! We went on 17 flights in 2 weeks and 4 days. The schedule was
mad, it nearly killed at times, but we got to Galapagos Islands, and Easter Island
off the coast of Chile. We saw the huge Maoi’s, the stone figureheads, located all
around the Easter island and for me to get to Galapagos islands was a major achievement.
At Quito, before we went on the Galapagos trip, we even visited the Equator and stood
on the actual line! They showed us a demonstration as well of how water swirls down
a sink clockwise and anticlockwise on each side of the Equator, so no, that’s not
For Galapagos we chose a small cruise trip, The Seaman, so it wasn’t very disabled-friendly,
but I managed, and te advantages were well worth it. Whilst a big cruise-liners would
have made it difficult to get on and off with all the stairs and health a safety
regulations for taking a disabled person onto the islands, our cruise boys made it
easy. They just bunged me onto a dingy, bunged the wheelchair on the dingy and then
there I was on the Galapagos islands seeing EVERYTHING…
Seals, huge iguanas, penguins, a huge variety of birds and wildlife, and when we
went snorkelling we saw fish, turtles, and allsorts, Steve even saw a shark!
On the main island we got too see the huge +200 year old tortoises up close in both
a park and the wild.
Steve even kissed one called Ranger, and it is said there was another marriage proposal,
but that this one was turned down on the grounds of bad breath and scaly skin, but
Steve is now working on these issues, hahaha!
Steve kisses Ranger
Angel Falls was stunning and being proposed to there was the icing on the cake for
me. Galapagos was spectacular and mind-blowing.
Easter Island was a part of the trip that was really too much for me with the flights
to get there and intense schedule. Both Steve and I ended up pretty ill in Santiago
on the way to Easter Island and on the way back and I found it too long a time to
be away from Marcus, but looking back I am glad I went. How many people can say they
spend Xmas Day on Easter Island? I used a wheelchair to visit the island, and it
was very bumpy (and quite hard-work for Matthew and Steve as well!) but I DID IT!
The best sight of the whole holiday, sad though this may sound, was for me seeing
our Marcus again, who was in the baby pool with his Tigga, when we got back. Marcus
just stared at his Dad, when we arrived, and stared and stared, then he started to
cry as his Dad stepped away to let me in the pool area on my scooter. If was as if
he suddenly realised, hang on, where have you been, I knew there was something missing….and
then panicked at the thought of his Daddy going again. After just 2 hours of cuddles
and playing and not letting his Daddy out of his sight, life went back to normal
for our boy and he was just fine again!
Our happy boy back with his Daddy.
We then spent a happy new year in the Keys, introduced Tigga to the delights of Key
Lime pie! She also swam with dolphins, a dream of hers since she was a very young
All too soon (one week later) we flew back to cold ol’ England. After two and a half
months of sunshine, it was quite difficult to adjust to the winter but almost immediately
we caught awful colds, and this year has been tough of me, as we seem to have non-stop
bugs and colds all year. This is no fun for anyone, but for me it is particularly
disastrous as it trigger my ms as well, and makes me rundown, weak, immobile, shaky
and ill. I think it is just the number of people Marcus and I now come in contact
with through going to the baby groups, that is the problem, but I’m not yet prepared
to give up getting out and about with my boy because of this.
I must admit, Steve and I pick-up and suffer the colds far worse than Marcus. So
I can’t even say for sure it is entirely down to him. There has been a lot going
about but I am hopeful that with the Spring, will come a break from all these colds.
Since we returned from the Florida Keys on January 6th 2007, we have been enjoying
Marcus’s day-to-day developments. The bugs and colds have been tough, but as we approach
the Spring, I am hopeful that better weather will bring with it better health.
Tigga, who did not make it to University last September is still living at Steve’s
flat and is worth her weight in gold, as things did not work out between Terri and
ourselves, so Tigga now has Marcus on both her days off (so Tuesday 10 am till about
Wednesday 6 pm, is my time for work, exercise, therapies and often just recovery,
and I need that too. Marcus then goes to his Grandma’s (my Mum’s) for most of the
day on Thursday and we often go up to my parents house on Sunday’s as well. Marcus
cannot contain his delight whenever he sees his Grandma. She is the favourite person
in his Universe (though his Daddy is of course the back bone!). I think it is partly
because of his musical interests (watching her play the violin, and also playing
the piano up at their house), but also his love of nature. They go out into the countryside
together, to the stream, the Brook and the Parks, and Marcus loves it. He always
comes back completely shattered!!!
Marcus wearing a hat we bought in Quito, Ecuador.
As toddlers go Marcus is very close to perfect (if he was actually perfect I would
be very worried as toddlers are not supposed to be perfect!!!). He is a very happy
little boy, very bright, and always laughing, especially with his Dad, who he totally
gets (they are as thick as thieves!). He is very good-natured and a little charmer,
so much so that when you are with him, it is like being a celebrity, as Marcus becomes
the centre of attention wherever he goes. I get on the tram with him on my lap and
by the time we get off he has made at least one new friend and been adopted by a
grandma-type lady! (people are always so lovely and willing to help, especially as
it is a unusual sight to see him on my lap on the scooter. I make sure I hold him
tight, drive very carefully, and keep distances to a minimum!). We often go to parent
and toddler groups, which Marcus thoroughly enjoys and also Upperthorpe Healthy Living
Centre/ Library, where he loves toddling about and seeing people he knows,and going
to the pool, the sports-hall, the Gym and the cafe. His latest favourite activity
there is to call the lift, which he can almost reach, and we go in it together and
go up to the next floor in it. He loves it when it judders. Everything is new and
exciting and wondrous to Marcus and it is a real joy to see his joy in everything
he sees and experiences!
Recently I have become brave enough to take the tram to town with him (only a few
stops) and I do a bit of simple shopping and then take him to the peace gardens,
where there is a wonderful fountain, and then to see the big shiny balls and onto
the Winter Gardens, all of which he loves.
Marcus at the peace gardens in Sheffield town centre.
Sometimes we then go onto a Baby Group held in a church off Chapel Walk called Jelly
Babies. The reason I say I am brave enough is because of my bladder urgency, which
takes some managing with a toddler on your lap, but I wear pads and padded pants
and only rarely do I get caught out. The padded pants are so not cool but necessary
to avoid embarrassment. I can’t just get up and use my Pipinette pot discreetly with
a toddler on my lap, and likely to run off if I stand him down, and the last thing
I want it an accident especially as Marcus gets older and becomes more aware.
Dad’s health has not been as good of late. Having the throat operation last summer
really aged him. It was a big thing to go through at the age of 78 and it has caused
him a lot of shoulder- and muscular pain. He is also a bit forgetful now and can
get a bit confused, and it January he had a fall (we think he stumbled) and cut his
head, but he is doing very well considering, and I am very grateful that the operation
took out all the cancer. I love my parents so much and value the time we have together,
especially now with Marcus too.
My brother Matthew came back from his exciting six months travelling the world, after
working on a placement at a hostel for young girls, in Mongolia, and he has been
living back with my parents and working once again as a careers advisor in Leeds,
commuting there everyday. He is a great support to my parents and a great Uncle Coconut
My Grandad, Marcus’s Great-Grandad, is still going strong and managing to live and
care for himself alone down in Somerset, even though he is now 96 years old. My Mum
and her brother, Uncle David, go down and stay as often as they can, for a few days
at a time, to give support, company and lifts to places, as Sidney has at long-last
given up driving (thank goodness) after an incident in a car-park where he hit a
few cars! To help him decide whether a mobility scooter would help him, I lent him
my 8 mph scooter, and it has enabled him to get out and about again, which was my
aim, and he did end up buying it off me for a very good price (it was a bargain!).
He didn’t have to pay anything but it was important to him that he actually owned
it and it seems to be helping him (he can take the scooter out somewhere and then
park it up, go for a short walk, and then come back to it, so I am pleased. It means
he can stay active and the world is more accessible to him again. It was a bit of
a disappointment to him at first, but only because it wasn’t a car and could never
do the job of a car, but now it is proving it’s worth. As my Grandad is rather hard
of hearing as well as in his 90’s, he lives a quiet life, quite detached from the
world but he does ok!
As I write this latest blog I have come down with yet another cold. They make me
weak, shaky and make life very hard indeed. I am very grateful for having such a
good fella, such a good family and such good babysitters for Marcus, because there
are times when I can barely look after myself, let alone him.
This Easter Sunday we went to my Dad’s church for an Easter breakfast and short-kiddies
service. During the service Marcus had a fabulous time toddling around at the front,
picking up daffodils and handing them to people. He then joined the pianist playing
the piano!!! It was so sweet and so funny! We then went up to my parents house and
Steve cooked us a delicious meal of salmon (lemon, garlic and ginger), basmati rice,
potatoes and roast vegetables. Though I felt wiped out with this cold I had a lovely
Marcus sat at the piano at his Grandma and Grandad's house
I have recently been seeing a Chiropractor but don’t seem to have benefited a great
deal from the kineseology and cranial therapy. However, I ill continue to seek therapies
to help me. I saw another Chiropractor in the Florida Keys and he found that my spine
does not curved back enough at the top, so my head rests too far forward putting
my nervous system under stress. It is a common condition (Click Here for further
information), but once corrected might help me further stabilise ms, so I use a neck
collar twice daily (early morning and at night before bed) for 20 minutes, and a
head weight belt for 10 minutes two or three times a day. Whether all this will benefit
me at all remains to be seem, but I figure it is better off corrected than not. I
leave no stone unturned in my journey back to health, remembering that the only failure
is not doing your best. Right now boosting my immune system with zinc, vitamin C,
GFSE and raw garlic are my priority because my low immunity is the main problem in
the bigger picture. I’d prefer to fix this than live my life in fear of coming down
with colds, though it might not do any harm to go easy on the baby groups for a little
while! So I journey on with courage, onwards and upwards!
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.
Congratulations to you and Steve on your engagement! He has certainly been a strong,
positive part of your life and the two of you have been through so much together.
You are now blessed with a beautiful, happy son and an upcoming marriage.
I hope you are feeling better and would recommend that you try oregano oil or olive
leaf extract to help strengthen the immune system. The success rate is phenomenal
and it works very quickly to eliminate the source of illness. It also seems to work
well with people with MS.
God bless and take care.
1. Posted by pfa on April 25, 2007
Dear Sylvie, though thinking regularly about you, I only visit your website about
once a year. However, whenever doing so (like today) you impress me so much and show
me what life is all about. Hope your health condition got better as the cold season
has gone. May god bless you and your family Johannes
2. Posted by Johannes on May 24, 2007
As I am a MS-er for 11 years now I can tell you: You are a brave lady. Congratulations!
Now in you family is living somebody who will need your support of all kinds for
So you must get rid of your MS (go to a permanent remission).
I am on permanent remission for over 10 years now and it is not so difficult.
On pages of my web site (kulvis.com) I am describing MS causes (triggers) and natural
cures (not treatments).
Having a scientific mindset (PhD in physics) I appeal only to scientifically proven
All best -
3. Posted by Czes Kulvis on June 13, 2007
I would just like to say how inspiring it is to read your story. You are a fighter
and God has truly blessed you and your family. I wish you all the best for the future.