Health Diary 11 Happy Baby Boy

"All our dreams can come true, if we have the courage to pursue them"

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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Unpublished articles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

December 2017

August 2018





Updates List

September 24, 2006

Marcus is a happy baby boy

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 him.

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 busy!


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!

Sylvie Brown


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

http://www.MSBPodcast.com

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 coming.

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 :-)

-Charles-A.

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 mymultiple@gmail.com. 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???

10. Posted by Ruchi on October 21, 2007



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

December 2017

August 2018





Updates List