"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.
Well in 3 days Marcus will be 5 months old and in 6 days we will fly off to the sunny
Florida Keys at long last. I am ready for some serious sunshine and swimming therapy
The first two months after Marcus was born were totally mad. It was as if I had been
thrown into another universe and a crazy one at that, what with trying to recover
from the caesarean whilst breast-feeding, which is exhausting and did my back in
further, doing shifts at night caring for baby Marcus, caring for Marcus a lot during
the day too whilst Steve was either on the phone running the mobility scooter business
or out on some repair or other business, and on top of all that dealing with the
press, both Local and National (but boy was that fun, we made the local news , national
press and even sold our story to a Woman’s magazine for over a grand!). I think it
was the lack of sleep that was the hardest. We had a few explosive arguments because
when I was at the end of my tether, beyond reason you could say, it wasn’t very nice
to Steve to come in and deal with and he often took it personally. I wasn’t criticising
him but it often felt like it. We were all doing our best and doing well. I usually
ended up having a bath at around that time just for a bit of time off, peace, relation
and sanity and that did revive me.
Physically I wasn’t doing too badly at all. My legs were stiffer and my back painful
from the caesarean, and all the angles lifting and handling baby Marcus but by January
my legs got worse, especially my left leg and foot which I could hardly lift at all.
I was starting to struggle to get out of bed and onto the toilet, transfer to and
from the wheelchair etc. and that scared me, as I value that independence so, so
much! Needing help to get in and out of bed, into the wheelchair, one the toilet
etc. takes you to a new level of care and that is something that I fight my hardest
to avoid at all costs. That IS WHY I DO WHATEVER IT TAKES TO HELP MYSELF, follow
whatever diet it takes, take whatever vitamins I might need, go swimming and or to
the Gym regularly even when it exhausts me etc. But on this occasion, though I was
eating a bit more fat and a few more calories due to breast-feeding, I think it was
largely stress, exhaustion and the post-natal drop in hormones, that were responsible
for my ms worsening. After having a baby women are prone to relapse and it was annoying
to be so conventional and follow this trend, but with the way I pushed and pushed
myself beyond my physical and emotional limits, not altogether surprising. I will
never know what triggered my ms to worsen, do we ever know for sure!, but I realised
that I needed to start putting myself first, and Marcus second at that time, because
he was thriving and doing just fine, whereas I was not. Marcus needed care but he
didn’t mind who gave it to him as long as his needs were met, and my sacrificing
myself wasn’t helpful as he can only have one Mum and he needs me to be as strong
and able as possible for him!
Marcus lifting his head to look at his pictures- strong little man!
So when he was 2 months old I stopped breast-feeding him, well he stopped taking
both breast and bottle anyway, he was far to hungry and impatient to be bothered
to breast feed by then anyway, so that decided that one. As a result Steve took over
the nights and I started to get decent sleep and rest at long last! I was just so
run down and I had a UTI as well so I needed it. Honestly I swear I could have slept
forever at times, but I needed it because suddenly it had all caught up with me.
What really scared me was the way my legs kept straightening out in spasm making
the simplest of movements a big struggle. It made me realise just how well I had
done over the last 7 years, fighting my way back from needing care just to get out
of bed in the morning, caring for myself, becoming self-employed and living relatively
independently (through use of wheelchair, walker, stairlift and mobility scooter
etc.) I hadn’t realised how remarkably far I had come in reclaiming my life until
One day in January I hit a real low, after an argument with Steve about baby milk
and phone calls (or something equally stupid, but I was negative and he went off
on one!) I went to the Gym and was devastates to find that I could take not even
one step on the treadmill. I was in tears and a hormonal wreck at that time, having
stopped breast-feeding and it was a very hard time indeed. Through the MSRC message
board I was reassured that life would go on and that a lot of it was hormones, which
it was, I realise that now.
Since that time I have had good nights sleep every night- STEVE IS MY HERO!- and
I saw my nutrition consultant, Brian Hampton, once again, and refocused on the anti-candida
diet and taking a lot more vitamins. I felt as though Marcus had taken all the good
stuff out of me!!! I took Wormwood for candida and am now taking olive leaf extract
for candida and detox. Whether this approach had helped or not I do not know for
sure, but it has definitely helped me, because I believe in it. I think the big thing
though really has been getting good sleep and rest. When living with a chronic illness,
you can’t push and push yourself constantly, because if you do at some point it catches
up with you!
Anyway, the good news is that since then I have gradually improved in my legs and
life has become relatively good again in that I am not shattered and can manage ok.
I find it tiring to do swimming or go to the Gym, but I do it anyway, because I think
it is very important. On the days that I don’t go swimming or to the Gym, I do Yoga
and then take a small walk out with my walker, either to the 1st or 2nd lamppost,
depending on whether it is a good or bad day (I’ve not yet made it to the 3rd lamppost
as I used to!). Sometimes at night I can manage the stairs up to bed as well but
I am so relieved that life is going on and I am so grateful to Steve
for making it possible for me to be a Mum and to start to really enjoy it now! As
a day job I can cope…it’s the 24/7 bit that is really tough (God, why didn’t you
at least make babies so they give you the 7th day of rest?).
We are so lucky because, not only is Marcus healthy and totally gorgeous, a real
cutie, he is also pretty good as babies go. Most of the time he is sat up looking
around, taking everything in and smiling at everyone (he loves people and always
returns a smile!). Sometimes he chuckles, especially when his Dad is playing with
him. He does have his moments too, but don’t all babies.
He is now around 14 lbs, and starting to sleep through the night, though he still
has a way to go here (as do I in recovering my mobility!). He usually had his last
feed (dream-feed) around midnight and then he’ll sleep anything from 4 to 6 hours,
have a bottle and then go back for another 4 hours. In the day he is awake a lot
now, feeds every 3 or so hours and takes a nap every few hours for an hour or so.
It is an amazing journey and it is wondrous how quickly they develop. So far Marcus
seems (and looks) just like his Dad in that he is sociable, likes to be the centre
of attention, finds life highly humourous and had a feisty little temper on him when
he is hungry! He is a real hit with the ladies and gets lots of attention wherever
It is especially funny when Steve had him in his baby carrier hung around
his neck with his leather Budweiser jacket all zipped up! The looks, squeals and
cries of ‘oh, he’s gorgeous’ we get when talking/scooting around down are lovely
(to which Steve replies with a smirk, ‘I know I am but thank you’).
We have taken far too many photos and far too much home video of the boy, but isn’t
that what smitten parents do! At times it is too much and hard to juggle everything,
but we love our little boy so much, we are happy that he decided to come and join
us on planet earth- our tiny little visitor!
Going to the Florida Keys with the heat, MS, and a small baby will be challenging
to say the least, but I believe that the sunshine does me so much good in the longer-term
(vitamin D appears to be protective against ms, maybe I owe my life to going to the
Keys annually through meeting my Steve?) and the daily swimming, though exhausting,
really does help as well!
Anyway, we are so sick of this terrible cold and long Winter
now. Whenever I feel as though I am really getting somewhere in reclaiming my legs
I seem to get a cold, bug or infection that knocks me back again. But I really am
lucky to have stabilised at all, never mind a Mum as well, so I will continue my
journey on, doing my best, triumphing against adversity and counting my blessings
of which there are so many! Though it is a very difficult life, as I have said before,
it is very rich (particularly in the people I meet and correspond with through the
Internet!) and I am just so grateful for the simple things in life, a warm bed, good
food, creature comforts, family and friends. Having long holidays in the sunshine,
travelling the world (Steve is planning another trip to S. America for the Autumn,
whilst Marcus is babysat in the Florida Keys!) and being a Mum are huge bonuses!
I think if you have your health, food in your belly and a warm bed to sleep in at
night YOU REALLY DO HAVE THE WORLD!
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.
Welcome back! You're just amazing - with taking care of Marcus and yourself and everything
Marcus is really a handsome little one and looks very smart too.
I'm glad you're going to soak up some sun - it will surely help you with your own
God bless to all..xoxoxoxoxo
1. Posted by PF on April 1, 2006
Hi Sylvie. I'm a fellow ms-er. I got your blog-link from Donna and enjoyed reading
your story so much. Congratulations on your gorgeous little man. I'm seriously thinking
of having a baby too, so it was really interesting to read your account of pregnancy,
etc. Enjoy your holiday.
2. Posted by Maggie on April 9, 2006
You and your family are amazing! Over the years I've seen many babies who resemble
their Daddies, but Steve and Marcus take the cake (or the bottle)! Keep up the great
work and don't look back, Sylvie. You're an inspiration to all of us. And don't forget
the sun block. :)