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

Home

Sylvie’s Autobiography

Inc Health Diary

Sylvie in

the Media

How to

Cope

with MS

Help

dealing

with MS

Diet,

Nutrition  

Exercise

CCSVI

Sylvie’s Poems


Useful

Links

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Unpublished articles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

Marcus and us - May 2008 to July 2009.

It's been over a year since I last updated this blog! That is because my health, vision and energy levels are so poor and I have enough on just trying to deal with the basic of day-to-day living! This is due to the fact that Marcus is now at nursery and flu and cold bounce off him (thank goodness coz a child that is up all might sick would be very hard. He brings them into the house and my immune system in so weak in spite of all my efforts to strengthen it, I come down with everything and this sets ms off and is making it progress, though thankfully slowly!

Marcus in the '59 Impala

Marcus the clown at his English 3rd Birthday party (end Sept 2008)

So life has been very, tough this year but I am not in pain and do know things could be a lot worse, so I still count my blessings (I'm not actually dying, I live in comfort, I can get care through social services should that be necessary, I have a magnificent, beautiful son and a strong, successful and gorgeous husband too. I am very lucky!

Marcus on his 3rd Birthday with his clown cake.

Marcus holding his dancing duck,

which does the birdy dance.

Last August I was mad enough (and still just about able enough) to go on a week's trip to Egypt with Steve, Marcus stayed in Sheffield with Tiggy and Ben and my parents and brother for the last few days. This was an insane destination for me with ms, the desert in the height of summer, but we did it somehow! Cairo and the pyramids in a horse driven cart with camels all around was wonderful and I survived in spite of the heat.

Steve and I in Cairo, Egypt

Steve by the Sphinx in Cairo

Arriving in Luxor was just something else entirely with the heat and humidity. It was like entering an oven. Without the air-conditioning in the hotels I would've surely died!


Apart from being in the Florida Keys last October and November, which was glorious, in December we went on the most wonderful Caribbean cruise for a week on the Carnival Liberty. It sailed from Miami and made stops at Mexico, the Cayman Islands and Jamaica. Now cruising is the way to travel.

The Fun Ship!

Leaving Miami on the cruise!

There are no queues or hassle. You just enjoy your time on the ship, sun-bathing, swimming, enjoying the Jacuzzi, chatting or having a drink or something to eat from the huge buffet/canteen, living in complete luxury, then you arrive at the port after a good night's sleep and a delicious breakfast, and you are there!


There is even a kiddies camp on the "Fun ship" and that was great for Marcus. They take your children away and entertain them with activities for as long as you like during the day (and even at night for a fee if you want to party!!),


It was great because we also had Ben and Tigga with us, and they had Marcus in their cabin (they came with us because the cruise was great value for money and too great to not come with us). It was ideal for me this way as Marcus was with us so I didn't have to miss him (but I didn't have to cope with him on top of travelling with disability and poor health and energy levels which is hard enough for both me and Steve believe me!).

Martin-Luther-King's

Children!

The best thing was that Steve was able to relax and unwind in a way he never usually can, being away from the business and not having to cook etc. He said that he managed to forget who he was for a while! After a visit on an island he looked forward to getting "back on that Fun ship". In fact he said "I don't care where it is going it could be going to Iraq, Beirut or Basra. I just want to get back on the Fun ship!" (and he wasn't kidding either! It really was that good!).

Tigga, Marcus and Ben in the Jacuzzi

Ship sunset

The food was amazing, a vast variety and as much as you wanted, even 24/7 room-service which was free. I was in fish and salad heaven. There were also 3 course meals in the evening and formal dinners on two nights

Formal Dinner: Us all glammed  up

Tigga and Ben on the staircase at dinner

All this for less than £300 with the exchange rate at that time!


On the ship they make money on the drinks, the casino, the prof photos etc but Steve and I don't drink (water or fresh lemonade was free!), don't gamble and only bought the odd photograph, so it really was for nothing for us this trip!


In Mexico we went on a trip to Tulum, Mayan sea-side ruins, quite a trip to get to but well worth it.

Us at Tulum

An Iguana at Tulum

Afterwards we ended up at a bar and I had my first beer in 10 years and got a bit drunk as Tigga kept encouraging me to drink and kept topping my glass up. This was a very freeing experience and I felt myself turning back into the girl I used to be before all the new rules for living well with ms took over. Tigga found it hilarious to see Steve and I roll-reverse as he started worrying about getting back to the ship in time, and I felt very laid back about it.

That beer in Mexico!

I also just used the dry-nite nappy with extra pad inside and another nappy outside and it was such a relief to do this as I spend a lot of my time and energy trying to get to toilets on time or worrying about that side of things. It made me realise too just how exhausting I can be to be around with all my rules, and how important it is to let go from time to time and simply live!


In the Cayman islands we went 100 feet underwater in a submarine. We saw plants, fish, a ship-wreck and even a mermaid (a statue!). Interestingly enough sown below you can see no red as the colour disappears, so Steve's red and black top for example was just black. Marcus was lucky enough to go in the front of the submarine, put head-phones on and almost drive the submarine (though at 2 years old not really!).

After this adventure we took a taxi to Hell!

Marcus helping drive the submarine.

The Mermaid, 100 feet under water

After our trip….

…..with certificates

Welcome to HELL, Tiggy and Ben

The rocks in HELL

Steve in HELL

Sylvia outside HELL’s Post Office!

Yes, we visited a place called Hell where there were some volcanic rocks and it was very hot! After a quick visit to the beach (I stayed in the taxi cooling down!) we did some shopping and then returned to the Fun ship. The Cayman islands, a British colony (where they drive on the left!) had a very civilised feel to them, and as tourists we weren't hassled at all to buy anything!


In Jamaica, however, it was a different story. We were hounded from the moment we got off the ship and the whole island smelt of cannabis!. We travelled to Dunn's river falls, where Tigga and Ben waded up the Falls, which was fun! I was content just to be carried into the waters and cool own in them sat on the rocks. Ben was very, very useful in lifting me up to get me into mini-buses etc. on these trips!

Dunn’s River Falls

Tiggy and Ben in the Falls

After this we were harassed at the markets into buying lots of clothes, but they were my type of short, light, easy to wash dresses and the right price, so I got some nice stuff. But it was annoying when you politely said 'No thank you" only to be told "hey, why you disrespecting me sister!". Disrespect! I don't think so, carry on like that though and You'll soon know what disrespect is!!!

All of Us

Marcus’s Jamaican hair extensions “Yeah Mon”

We struck a deal to get my hair-braided so I went off and did that, then after a bit more shopping at another market we returned to the Fun ship. Jamaica was great but I don't think I'd go again, especially not for a relaxing holiday (interesting to note it is no longer a British Colony!).

Me and the Fun Ship at night!

Marcus with Fun-time Freddy.

The ship's mascot was "Fun-time Freddy" who Marcus loved saying Hello to when he met him walking around the ship. On the final night Marcus took part in the Xmas show with all the other kiddies .

Marcus in a cabin bath-robe

Marcus and Ben in their cabin.

He went onto the stage to hang something on the Xmas tree, and Tigga was is tears she was so proud of her little bruv (as she calls him!). Then when Santa came Marcus was 3rd in line to see him and he went straight to the front of the queue to see Santa and sit on his lap, the cheeky monkey!

Marcus on stage with Santa!

Marcus in the disco dancing with Tiggy!

Marcus, Tiggy and Ben dressed up for dinner.

Out family pic. Standing me up and holding me up isn't easy, but as you can see Marcus is holding Tiggy and Ben's hands' while Daddy supports Mummy!

After the cruise we drove straight up to Orlando, where we stayed in a lovely villa, which we had booked for the week. We went to Busch Garden and to sea-world, which Marcus, and of course Ben and Tigga loved, and we did a lot of shopping, picking up many a bargain, mostly clothes, which was fun. Steve got a leather jacket for himself, and one for Marcus, which says "Wild-child" on the back. They cost $100 for both, and made my boys look seriously cool! Steve also bought me some lovely, smart basketball dresses, one white and red, and the other blue with many basketball badges on.


Steve also got a T. Shirt that says "From My Space………to my Face!" (with appropriate stickmen diagrams, on the computer etc). This was hilarious, especially when I taught Marcus to say this in the toilets at the "all you can eat" Chinese buffet. He went back to Daddy, Tigga and Ben and just said it! After a few moment silence trying to work out where he had learnt to say that, everyone pissed themselves, so of course Marcus kept saying it for a further 20 minutes or so, as he got a reaction!

Shamu’s show at Sea World, Believe

Marcus, Tiggy, large Penguin and Ben at Sea World

It was a lovely relaxing week in the sunshine, with many lovely buffets, and then we flew back to England and spent Xmas back with my family. Marcus loved him stocking from Santa, but the day was ruined for Steve as the turkey he had got was left out of the fridge over-night (my brother thought it was frozen!) so had to be thrown away. Steve could not get over this mistake and went of and spent most of the rest of the day cleaning our house! We still managed to have a good day. For me it was all about Marcus, and especially his little face opening his stocking!

Marcus, spots a “Yeyow”, a Squirrel, at Sea World

Marcus and his stocking from Santa

Xmas 2008, back home in Sheffield

So to this year and my saving grace has been the new power-plate machine at Zest, the local Gym in Upperthorpe. In January I felt at an all time low but I needed to exercise, and this machine exercises your muscles by vibration (abs, legs, biceps etc) so you don't have to do anything.

Marcus, Mummy and Daddy in the Florida Keys

Marcus on his trampoline in the Florida Keys

As such it is perfect for people with ms! I was struggling to transfer onto the commode/toilet and onto the stair-lift, and using my muscles gave me back some all-important function. I still struggle at times, especially when I'm tired and have done too much, and Steve has to put his belt around me and hoist me about, but it is not as often I am very grateful that I am light (7 stone). So we manage in this way but I don't know for how much longer. Going to the Gym gives me a physical boost (my legs feel more my own again for a short while at least) as well as a psychological one, which is vital. When I'm tired later at least I know I have exercised because before I started going to the Gym, I was quite capable of feeling totally wiped out without having done anything at all and that makes you feel very depressed and even worse!

Marcus and Daddy in the Florida Keys

Marcus and Mummy back from the pool

in the Florida Keys

So I end to go to the Gym just up the road every other day or so after coming downstairs for breakfast. It is a relief to be able to start putting myself first again now that Marcus is getting bigger, and therefore easier and even helpful already! In my shoes having ms, IT IS NOT SELFISH TO BE SELFISH coz if I'm not I end up in a bad way and needing lot of help!


I also started lifting some weights in the Gym, though only 1 lb for my weak left arm, and 2 lbs for my right one, and recently I got confident enough to start using a couple of abdominal exercise machines, which I transfer onto and off again back onto my scooter. I use the lowest weight and it is a bit frightening to me just how weak my abdominal muscles have become but I am focusing on the fact that I can do this and so as such the glass is half full and can be filled even further!


After the Gym trip I sometimes go to Tesco or try to do some email but soon have to rest, I lie down but try not to spend too much time lying down. I am somewhat trapped upstairs after this as I get too tired to transfer onto the stair-lift!

Marcus with his felt tips and pencils

In the Florida Keys

Marcus playing pin ball with daddy on our sun deck in the Florida Keys

I meditate, which usually puts me to sleep, or listen to relaxing music or recently I have started to listen to 'Nobody knows the trouble I'm in' by Louis Armstrong as I love this song and I'm attempting to connect with God. I am praying a lot too and spending time in stillness because I do believe that prayer does help and I need to have faith! I regard all I have achieved in he last 10 years as miraculous. Marcus is my second miracle and I do believe I will be granted a third. I think I am going through difficult times because motherhood always comes at a price. It is just a lot higher for me as my health is so much weaker, but I believe I will be ok in the end and will recover. After all I would never have dreamt all that I have done and achieved in the last 10 years were possible. For the next 10 years I need a 3rd miracle but I believe this is possible. I have to believe as I have nothing to lose by believing and in fact a lot to gain. I so spend a lot of time watching TV upstairs, and Steve brings me up enormous salads and healthy meals so I am very lucky. Marcus comes in to chat and play a lot.. He often asks me "Are you better?" and I try to respond positively. I do this because I once said 'No' and he replied 'It's my fault!', which broke my heart and woke me up. He'd got that from me saying how he was bringing the bugs in and making me poorly but it's not his fault. I think it's sweet when he says 'I'm struggling!', another phrase he has got from me!


I will find a way through this difficult chapter, which I think I have to go through. Sometimes you know when something has to be done but you only find out why later. That is how I felt about moving to this house from my bungalow and stopping home-care and becoming self-employed even though I am along way from healthy. All pretty irrational decisions but thank goodness I had the courage to do them because having a baby in a 1 bedroom council house would have been very difficult and Steve could not have lived with me or married me, which with a baby was necessary, had I not become self-employed and paid my national insurance stamps and taxes for 5 years. Well he could have done but I would have lost all my income support for incapacity benefit as this benefit is means-tested, so he would have had to support me financially as well as physically, which doesn't seem right at all. As it us I now qualify for what was called incapacity benefit, which is not means-tested, and in January of this year I have had to surrender and sign on the sick again (not that I ever got well but well enough to run the scooter business on the Internet and qualify and do web-deign at home and make money that way!). At present I struggle to function at all on the computer. It is hard to read and I get so tired. I am writing this in short-bursts and then I have to rest and recover so it is taking forever!. I am very determined but I also have to be hugely patient!

Marcus, Ben and Tiggy in the park

in the Florida Keys

All the boys Sleep

Now that Summer is here, the bugs and colds from nursery have abated thank goodness but the humidity is tough. Thankfully I have got a small air-conditioning unit in the room I sleep and rest in, so this is helping as upstairs our house gets very hot! Again I count my blessings!


I have become very dependent on the bunk-bed I now sleep on to pull myself up on using the top-bunk in order to get up out of bed and transfer onto the commode, and also to hold onto to balance well enough when stood to put my jogging bottoms back up. It is good that I can just about manage using the bunk-bed but it is not good to be so dependent on it and I think the time has come for me to have a supra-puic catheter put in through my tummy. As my bladder is spasmy I am concerned that my bladder won't accept the catheter but if it does it could free my life and my world up no end. Apparently spasmy bladders can be injected with Botox as well and this van be an effective treatment, though it has to be injected every 3 months so I may end up trying this as well.


So far this year nothing ha happened as first my Neuro appointment had to be chased up twice and now my urology appointment had to be chased up. Now this is this month, July, but as we go away to the Florida Keys in early October that doesn't leave much time to try this, so it may have to be next year now. This is not ideal for managing in Florida but what can you do?


At present my desperate plan is to keep on keeping on and next Winter .(Jan thru April, Oct thru Dec we will be in the Florida Keys) live separately from my husband and little boy. Yes, it will be very hard beyond words not to see my little boy, Marcus, but I think I will have to sacrifice my time with my boys in the short-term in order to be there for them in a reasonable state of health and ability in the longer-term. I feel that I have no choice about this as the effects of the non-stop bug and colds I am getting is causing my ms to get worse and I cannot take anymore.


I'm not sure exactly what we will do as I do need help and care quite a bit even now, but I see it like playing chess. I have to make the right move. As we own next door, which is at present rented out, I am hoping that Steve and Marcus will move next door. In the longer-term, Tigga will be back in Sheffield, so she could live next-door with her boyfriend Ben, as Marcus adores them and is as happy as Larry with them.


When we bought next door it just felt right even though I wasn't exactly sure why I wanted us to invest in this house of all houses. Now I think it may have happened for a reason, so that I can avoid the relentless bugs. They won't last forever but the roller-coaster will continue for a good while yet and I don't think I will survive it without ms progression if I continue to have contact with Marcus in the Winter months when we are not in Florida! If you are on a train-track in the path of an on-coming train it makes sense to get off the track and out of the way, doesn’t it?

Marcus, the ice cream van man

in Hillsborough Park

Marcus and his Grandma having a cup of tea in the garden

I will still see Marcus when he is bug-free and also through a web-cam on the computer (and talk to him that way too) maybe even have CCTV? It will still be awfully hard but right now I don't see any alternative.


And this year I have tried many things.. I take LDN 3mg a night (any more and it makes me too stiff). I don't think it does me much good apart from improving my mood, and maybe helping a little with fatigue, but it is supposed to boost the immune-system so I'd rather take it than not!


I am following the Best Bet diet (though I can tolerate oats and barley in moderation) as I have done for the last 10 years, taking a stack of vitamins, eating raw garlic, taking extra Zinc, lots of Vitamin C (powder and capsule with Bio-flavanoids), 2 000 IU of vitamin D3, Co-Q10 (200 mg), alpha-lipoic acid (500mg), glutathione and grape seed extract (which strengthens the blood-brain-barrier). Also I tried Serrapeptase (a silk worm enzyme- 3 capsules 3 X a day) for several months but it did not appear to do me any good. I take 3 digestive enzymes twice a day, and Udo's oil, Hemp oil, Evening Primrose oil and Fish Oil, as well as bee pollen. I also have reflexology every few weeks and for UTI's I am drinking Colloidal silver, GFSE (Grapefruit Seed Extract) cranberry power and I drink lots of water. I also take acidophilus at night when needed. I have also tried Echinachea but have not found it helpful. I have a Colonic every 3 months, only I missed this this year due to all the bugs and colds, so when I did eventually go I was very clogged up, so it was difficult for Jay (horrible!).

Marcus, Jack-in-the-box, popping out of blue recycling bin

with Uncle CoCo

Marcus, Mummy and Henry (now 13 and

Marcus adores him) at the Lord Mayors Parade

I think the major problem I have is hormonal as I keep on losing my periods and it is not an early menopause. I think this is due to an incomplete digestion of fats as my stools floated and would not flush down the toilet. Thankfully my new nutritional programme seems to have resolved this problem this year and I actually got a period but only one. Though I am a bit under-weight I don't look it so I don't think this is the problem.


Pregnancy was so good for ms, I just wish I could be permanently pregnant but definitely without any further babies! In order to make sure I don't get caught out again, I have had a copper coil fitted (but as I'm not convinced this prevents sperm meeting egg we still use withdrawal as well). I adore Marcus but I couldn't do it all again.


So onwards I journey, because this is the life I have and I have to make the best of it. It is dreadful in many ways but I know it could always be far, far worse and I do believe I will get through to better times again. I have to in order to be there for Marcus and my faith in my future is strong. Wish me luck!


To read my next update Click Here.


Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=from living with ms site autobiog 7

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