"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 Marcus is now 11 months old and he is crawling, climbing and grabbing things
like a nutter. He thinks life is a blast and smiles and laughs all the time. He only
cries when he is tired or hungry so we are really lucky! He is such a charmer, I
have all the neighbourhood teenage girls (who I have known since they were little)
knocking on the door and asking to play with Marcus and take him out to the Park
or the shops! This is proving to be a real blessing, as I know I can trust them,
(they adore him and look after him so well!) as it gives me a much-needed break.
The last 11 months have been such a roller-coaster and at times I have wondered if
I was going to survive but I am doing OK considering. I could be better but also
could be so much worse. I managed to walk with my walker to the first lamp-post around
the corner today, something that had become impossible in the last few weeks, as
my left ankle refuses to lift. I do a lot of gentle exercising and mobilising it
at the minute, which helps, but it is a relief to walk just that short distance today,
as I believe in the philosophy “Use it or Lose it”. However, I became so weak and
rundown that the slightest thing exhausted me and I had to conserve my energy and
use what I had, to look after Marcus. I has not realised just how much energy I expend
looking after him, so in the last month swimming or going to the Gym have not been
on the cards, a fact I don’t feel good about.
But I am counting my blessings, of which there are many! A couple of weeks ago I
had a set-back with MS, triggered by goodness knows what. I lay down for a rest one
afternoon and could not get up again. I could not stand or transfer or do anything
independently and it scared the hell out of me, no doubt triggering anxiety, which
made it all worse. Anyway, I went to bed, took two paracetamol, rested, played with
Marcus on the bed, played my affirmations tape, calmed down, and THANKFULLY was able
to transfer to the commode as usual that night. The following morning, I could get
around as usual (without help), which means the world to me, and I celebrated by
making cups of green tea all day long, SIMPLY BECAUSE I COULD! I am addicted to drinking
tea, and it is important to me to drink enough liquid to keep UTI’s at bay, especially
at this time of year (the autumn), so I happy overjoyed to be able to do this and
cope with the consequences of this (frequent visits to the loo!).
I think this event was triggered by a bug still haunting us from Marcus’s stint at
nursery. I had an event a few months earlier triggered by a very nasty bug Marcus
brought into the house from nursery, and again I could not get out of bed, but I
also could not stop being sick so I knew what was causing that event and did not
panic as much. A jab from the doctor stopped me vomiting and thankfully I did recover
my ability to transfer etc. again, so that crisis passed.
Thank God for Grandparents and Uncle Coconut (my brother) is all I can say as they
had Marcus for two nights and we needed the back-up because Steve has come down with
that same nasty bug 24 hours earlier and he too had been unable to get out of bed,
which shows how bad that one was, because he is a strong, fit man! Luckily, I was
ok to look after Steve and then when I got sick he was ok to look after me (and run
the business) but we could not have coped with Marcus at that time as well!
Anyway, the end result after two months of Marcus streaming with cold after cold
and having diarrhoea from bug after bug from nursery is that we pulled him out of
there. It was a shame because he did love it and was very well looked after, but
we could not take any more!!! It wasn’t much fun for Marcus either.
They do say that it is good for a baby to build up an immune system early, but when
you put 7 babies in a room together, and they are all building up immune systems,
it is a real breeding ground for germs, and a recipe for disaster for me anyway.
The doctor told me that after 12 months it would settle down, but I still think that
it you come across nasty bugs and viruses, you will generally get them, as proven
by Steve who is fit and healthy and was still knocked for six by one, so we have
decided to cross this bridge later (not now and later).
Those two months proved that Marcus’s immune system is working very well the way
his eyes and nose were streaming with cold and mucous and nothing went onto his chest.
In fact he handled the whole deal a lot better than us, but it did cause disruption
of his sleep at night as well, which added to the load Steve was managing.
Steve has been unbelievable in how he managed to run the business, which has been
very busy and put him under extreme pressure, whilst caring for Marcus at night and
coping with me needing help as well. Sometimes the pressure has been too much and
we have had some explosive rows but he is still here and loves his boy and seems
to still love me, so he is one in a million.
I am trying to learn how to simply ask Steve for help and be very specific, rather
than moaning and not handling things (a woman’s way of asking for help, as women
understand this and naturally act upon it- but men don’t they just react to it!)
which simply winds him up. I feel bad about needing help but going on about it does
not change the fact that I need it, so I am learning to be clearer and more direct
about things (honest!).
So we had to find an alternative to nursery, so that I had the support to manage
the childcare! We looked at getting an au pair but you can only get one from age
2 upwards, so we then thought about whom we could hire, and offered the job to Marcus’s
favourite babysitter, Tigga. Although Tigga works full-time, she was very keen to
look after Marcus in her spare time as well! This has worked out very well, especially
as Tigga has girlfriends who adore Marcus as well. Now Tigga is doing a lot of overtime,
her friend Terri often has Marcus as well in her day off, and occasionally Marcus
is looked after my Roe and Keeley as well. He thinks they are all wonderful! He even
went on a day trip to Bridlington with Tigga one day on a coach with a load of other
Mum’s and babies, as it was organised by Surestart!
Tigga and Terri needed to find a new place to stay as well, so they have moved into
Steve’s flat, and exchange babysitting for rent, a deal which works well for all
of us! It is ideal because Tigga is coming out to the Florida Keys to babysit Marcus
in the Keys for a couple of weeks while we go off to South America on our travels
once again (he is too little to take with us what with the vaccinations needed!)
so he will know her very well by then and be a very happy chappy with her. It will
hard to leave him and go away but I know he will be in good hands and have a wonderful
time with Tigga. They may even get to Disney over Xmas!
Marcus is not content with having 4 girlfriends to love him! Including the local
girls, Kirsty, Halish, Michaelea, and Stacy, Marcus has 9 girlfriends/big sisters,
as many as Steve has Classic American cars (as he has just bought two more!).
I am continuing to follow my diet, take vitamins and detox as well as everything
else. I am taking Parragone again which contains wormwood and should help eliminate
candida and parasites. No doubt this is all taking it out of me as well but I am
sure my efforts, self-discipline and determination will pay-off in the longer-term.
I want to start swimming again and using the Aquagym, but carefully as my energy
levels are low and used up caring for Marcus anyway. When we get to the Florida Keys
in a months time, I will get back to daily swimming and soak up lots of lovely sunshine
which helps protect me against ms as well thanks to the vitamin D3 you get from sunlight
so this will help.
This July got so hot a humid it was a bit of a nightmare for me, but this month,
September has been glorious. I’ve enjoyed the lovely sunshine but without getting
too hot as there has been a lovely breeze! I really do enjoy and value my time with
Marcus, especially in the back garden up at my parents house, as he is such fun to
be with, and so smiley and responsive!
I’ve made some great purchases on e-bay, real bargains! The best one has been his
rollator, which he sits in and pushes him about the house in. It saves me so much
energy as he rarely climbs out of it (though he can and will begin to soon) and yet
is relatively safe and independent. It enables him to walk really, but pretty safely!
I even took him out in it the other day and we went for a walk along a footpath after
a couple of dogs and had a lovely adventure together, with him rolling along and
me on my scooter. It was hilarious to see him go! He was determined to catch up with
the dogs but they were equally determined for him not so catch him! I pulled him
up any small hills and held him back going down slopes. A nice lady carried him across
the road and we ended up in the local library meeting lots of people, many of whom
know us, exploring and doing lots of new things! He must have walked at least a quarter
of a mile that day!
11 months is a lovely age and the way Marcus is with his Dad is very special. They
are a right pair and Marcus thinks his Dad is hilarious already! We are enjoying
the magic and surviving the rest, especially when the little munchkin is tired but
really doesn’t want to go to bed even at 11 o’clock at night! We usually let him
stay up as long as he is good, because it suits us to let him sleep in a get up at
9.30 or 10.00 in the morning.
He was a bit slow in his weaning onto solid foods because he wanted his milk still
and though I’d give him baby food with anything with any lumps in it he’d usually
cough and then barf everything up again. But in the last few weeks he has suddenly
got the hang of chewing and enjoys eating allsorts. It gets very messy but is great
fun, and he has far less milk now as a result. He has also started to sleep through
the night now that he has a tummy so much fuller. He likes brown bread and jam, which
he often has for his tea but that does get very messy. Another favourite of his is
eating a juicy peeled pear, and he also loves pineapple juice!
I don’t think it will be too long before Marcus walks, a prospect that is daunting,
but I am trying not to worry about it (I have enough on surviving the present to
be honest!). I am just trusting, that if he does start walking in the Florida Keys,
which he probably will at the rate he is going, we will cope!
Hopefully Marcus will find as many girlfriends or aunties in the Keys as he has over
here! I am just thrilled that Marcus is so healthy, happy and doing so well. It has
been very tough this year, and it has taken it out of me and has tested my and Steve’s
relationship to it’s limits, but thankfully Steve is a very loyal and strong man
so he is still here, still seems to love me, and is totally smitten with his boy!
MS and my lack of health have made me feel like a problem a lot of the time, because
I am difficult to be around when I am exhausted and ill and I am forever calling
him when he is very busy which turns me into a person who seems to be forever bugging
My health can be a nightmare and as it is my nightmare, sometimes I don’t feel good
about having to share this reality with Steve and Marcus. I simply don’t want to
feel like a hindrance or a problem and often I do, but I have to remember that this
is not my fault and having Marcus was a very courageous thing to do so they are both
very involved in the ‘nightmare’ side of my life.
On the whole though when the dust settles we just simply count our blessings, because
we are in a good position financially and Marcus so far has turned out to be everything
we could have hoped for and more!
Apart from climbing, Marcus seems very musical. He loves listening to his Grandma
playing the violin! He listens agog and has seems to have a special relationship
with her, as he is forever grinning, laughing, climbing up on her for a cuddle. He
also loves his Baby Einstein, and David Attenborough DVD’s and his favourite music
video is Taylor Hicks, winner of this year’s American idol. I have dedicated one
of the songs Taylor sang, to him. It is ’You are so beautiful to me….you are so beautiful
to me…you’re everything I hoped for…you’re everything I need…You are so beautiful
to me!’ as this sums up how we feel about our boy most of the time. It is also a
song that Steve has been singing for years and it is mesmerises Marcus!
Marcus’s Grandad, my Dad, has had quite major surgery on his face/neck to remove
a skin cancer. The doctors must have been quite worried to go in so extensively (the
cut goes from the cheek all down his neck) but it seems that they did not find anything
more sinister when they went in, so I that is the good news. Still to go through
such a surgery at the age of 78 has been quite an ordeal for him. He has had a couple
of skin grafts on his face as well. He can’t sleep well due to pain and his shoulder
is giving him gip, but all things considered he is coming through this ok. It will
just take some time to recover. He needs to rest but my Dad is realty not very good
at this. Like me he is an impatient and bad patient. He likes to be busy and active
and finds it hard to slow down!
My brother has packed in his job in Luton as a careers advisor as it was time to
move onto something new. He then came back to Sheffield, coincidentally that was
during the world cup so he got to watch all the matches…hummmmm funny that. It was
good timing though as I really appreciated having him around for a couple of months
helping me with Marcus. He also did some delivery work for Steve, which was helpful
as Steve’s No.1 scooterman Paul, was off having a kidney removed, one which was damaged
during a car crash the week after Marcus was born, caused by a drunk driver! So between
scooter work, babysitting, organising our autumn South America trip, organising visas
for his own extensive travel plans for the year and watching footie he was kept pretty
Then in July he went off to Mongolia, travelled around the country for two weeks
and then started a voluntary work placement, working and teaching at a drop-in centre
for young girls. He will work there for a few more weeks then he is off on his travels
to China and will meet up with us in South America in December!
Now that the scooter business is calming down and Paul is taking over the running
of it again, and we have the girls helping to look after Marcus, I can look after
myself a bit more and we can start enjoying a bit more family time together. Trying
to explain the fatigue to Steve and the shimmery and blurry vision that comes with
it, a sign telling me that I must rest, is very difficult. How does one explain to
a person who doesn't suffer fatigue that one is completely wiped out, sometimes having
done next to nothing?.
This summer we did manage to get down to Somerset so that Marcus got to meet his
95 year old Great-Grandad, which was lovely, and while we were down there we visited
Longleat and Cheddar Gorge which was fun!
The other events this year were the surprise 50th Birthday party I organised for
Steve (which took some doing!). I booked the function room in the pub just across
the road and organised a buffet and our nephew Stephen Singleton (who was in the
80’s band ABC) offered to do the DJ’ing. Anyway, everything was going to plan and
then just at 8 pm the time I had organised to get Steve across to the pub (saying
the Do was a friend’s wedding reception), the heavens opened and it poured down!
It was like a tropical storm and there was so way I could have persuaded Steve to
go out in it, but never made him take baby Marcus as well. So in the end I had to
tell him. I thought he knew anyway as there were so many clues, strange letters,
and phone-calls, even his lodger Iman turning up at the house with a B’day card and
present, but he hadn’t suspected a thing.
So our friend, Roger, pushed me over the river that had been a road minutes earlier,
and Steve took Marcus and an umbrella and we made it across to the pub as quickly
as we could. Thankfully I had organised for the guests to arrive at 7 pm, before
the rains had started, and about 40 people had turned up. They could see us coming
over the road in the mad storm and when Steve entered the room he was greeted by
a round of applause. I then entered to room in Roger’s arms, having been carried
up the stairs, and we had a great evening. Marcus in spite of a cold, rose to the
occasion (as he always does!) and everyone got to meet him and hold him. I was so
relieved that we had made it over there without being struck by lightning!
The other part of Steve’s Birthday was the present I gave him: a 20 minute flying
lesson in a Tiger Moth airplane (built in 1941- the year my Mum was born- so 65 years
old!). Dues to popularity and the weather, the flight did not take place until September
the 4th, but STEVE DID IT! He said it made him fill his pants and was the 3rd scariest
think he had ever done (2nd being piloting Stan’s boat, and 1st being scuba-diving)
but he flew the plane for a bit and though not for long he flew it well, and enjoyed
the rest of the flight, particularly the landing!
Last weekend we got to Thorsby market as well (Nr. Worksop) and we plan to go to
Skegness as soon as we get a nice day.
So though difficult, sometimes beyond belief, it has been an eventful and exciting
year and I continue to take a day and a time and count my blessings!
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.
Sylvie darling, thanks for the update! I know what you mean about trying to explain
MS fatigue to others... every movement is a major undertaking and even the mere thought
of what it takes to move can be so overwhelming! I know it's been a tough year for
you in a lot of ways, but you are doing really well and I admire your strength and
courage. Being a new mom is hard enough, without all the extra challenges you have!
Enjoy your vacation, you REALLY deserve it!!
1. Posted by Donna on September 29, 2006
Holy Smokes! That's one heck of a posting.
2. Posted by mdmhvonpa on October 3, 2006
I'm with mdmhvonpa.
That was as textually informative as it was illustrative (you have a delightfully
cute son! :-)
I hope you don't post like that too often or you have way to much time on your hands.
:-) (With a little boy... Too much time on your hands... Not in the same sentence?)
By the way, I have a podcast for MSers , by an MSer (me :-) at
Why not check it out and send me some feedback?
Charles *at* MSBPodcast.com
3. Posted by Charles-A. Rovira on October 10, 2006
Thank you for the posting. Life certainly has been a whirlwind for you and you're
doing so well with the challenges - keep on going!
I, for one, enjoy your updates and don't think they are too long. Please keep them
Happy upcoming first birthday to little Marcus, and all the best to you and Steve.
4. Posted by pfa on October 15, 2006
hi Sylvia enjoyed reading about you 3 Marcus is a lovely little boy. what a lovely
job you have done at bringing Marcus up with your m.s. it’s not very nice to be ill
a lot of time i no i have r.a. and have done since i had my daughter 33 yrs ago and
its hard work Marcus is a credit to you both. keep well. jean.xx
5. Posted by jjean on November 26, 2006
I hope you had a merry merry and are off to a happy happy :-)
May the coming year bring you peace, joy and health (and some recovery.)
Although I suspect you just need a break from the kid. You love them but its ex-haus-ting
6. Posted by Charles-A. Rovira on January 2, 2007
Sylvie congratulations for your fine blog and all of your efforts round MS. You have
a lovely boy indeed. I'm Homer and I'm from Greece. I suffer from MS since 19! Now
I am 30. I've been through a lot with my MS adventure but during all this time I
managed to be generally okay as far my symptoms are concerned. I would give my recovery
a 90% success. Please feel free to contact me firstname.lastname@example.org. I want to know
more about your course.
Visit my blog http://www.mysclerosismultiple.blogspot.com
7. Posted by Homer on January 19, 2007
Sylvie I've recently uploaded some amazing articles witten from Dale Humphreys round
MS published in Townsend Letter magazine.
Take a look if you want you may find it helpful.
Kisses to your boy!
8. Posted by Homer on January 30, 2007
well done for blog, baby and posting all this BBD related info. Interesting to see
\homer posted a comment - I read Homers story last week too. I am keen for my wife
to step up the BBS and vits. thnks, d
9. Posted by DAVID on February 18, 2007
My 1 yr old boy is happy most of the times..wonder y ppl ask the same question in
diff ways..doesn't ur baby cry???