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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Unpublished articles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

March 19, 2006

Life has gone on and Marcus is blossoming

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 now!


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 this reminder.

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 not always!

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 he goes.

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!


Love

Sylvie x


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 else.

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 healing.

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. :)

3. Posted by Diane on May 31, 2006



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