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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Unpublished articles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

November 1, 2005


Tiny baby Marcus arrives safe and well

Full Name: Marcus Andrew Stephen Wright
Weight: 5lbs 9oz
Arrived: 22nd October 2005 5:32pm
36 weeks pregnant to the day


As some of you will already be aware I had a baby boy on Saturday (22nd October, 2005).


Hi Friends,

Well I got out of hosp on Saturday, the day before yesterday, 7 days almost to the hour after I went in (in Sat 22nd 3pm- out Saturday 29th 3 pm).

The week has been one big blur in a way as you can imagine with the surgery, adjustments and lack of sleep. Marcus is an angel during the day, but he's up most of the nights, think he's catching up being so tiny and with such a tiny little stomach.


I ended up having an emergency caesarean (planned for Thursday the 27th) after my waters broke on Saturday afternoon on the 22nd (I suspect they had been leaking on and off before this at times, especially on a couple of previous nights, but with my appalling bladder function in the last weeks of pregnancy it is hard to say!). In a way it was better just to have it all happen rather that to know it was going to.

In the morning we went to town and to the markets as usual for fruit and veg (Steve's gotta have his pork pie or 'cholesterol bomb' as he calls it!) and the funny thing is that I decided to wear my Poncho from Lima, which makes me look (and feel) like a Peruvian Princess, so I took a photo of myself in it outside the cathedral by a Santa in it, my last photo whilst pregnant as it turns out!


At noon I was happily swimming in the swimming pool and home and preparing some yummy garlic chips, made with olive oil, by 2 pm, only I didn't get further than boiling the potatoes (which would then be seasoned and grilled), before things started to worry me. I went to the loo, but then I kept leaking fluid on and on intermittently after and it didn't feel like it was coming from my bladder. It also had a Mummy smell about it and seemed a little bit blood-stained so I called the hospital trying my best to stay calm! (I was shaking a bit!). They said to come in for a check, but no real rush. So I finished packing my hospital bag and off we went!

At the hospital I was asked to lay on a bed while they did a trace, which was described as 'gorgeous' (so baby was doing well!). I started getting what I thought was intermittent wind-pain, at which point Steve started taking the piss out of me, whilst videoing, saying 'she's got wind...it couldn't possible be CONTRACTIONS'. I was also reassuring him that it was no doubt all a false alarm, to which he said to the camera, 'She says it's a false alarm...it couldn't possibly be LABOUR could it?'...knowing full well that this was highly likely due to my flushed face, breathing and reeling about on the bed in discomfort. At this stage I knew my waters had broken as I could feel liquid coming out but I wasn't in pain, it was just discomfort...which I then decided must be these Braxton Hicks contractions they talk about!

I took the nappy I was wearing off after about 40 mins and it was clear that my waters had broken without the need for any Doctor to check, so suddenly everything started happening! The trace also confirmed that I was actually experiencing contractions so a doctor appeared in great haste to check me over. An internal examinations confirmed that I was actually already 5 cm dilated...and the doctor could feel the feet in the birth canal already as my baby was still breach (as we knew!). I could not believe this as I wasn't in any real pain at all. How could this be?

Suddenly all hell broke loose and I was attacked from all sides with Doctors, Anaesthetists, nurses and goodness knows who else! I also needed the loo but there was no time. I was assured that incontinence was not a problem, but I was very uncomfortable about losing total control of everything with an emergency caesarean looming! They shoved a catheter in and I was transferred to a trolley and wheeled into the room where the surgery was to take place, and transferred onto the table. I had no choice but to let it all happen! Steve was given a green gown, and mask, which made him look like George Clooney (and very sexy with it!).

I recall a nice chap called Jim, making jokes, reassuring me throughout the whole operation and trying to put me at ease, but it was all pretty traumatic. They gave me an anaesthetic injection in my back and then the spinal injection went in and I went numb from my chest down! They put a green screen up and Steve came in...boy was it good to see him!!!

The actual operation was one of the most surreal experiences of my life. There was no pain but lots of tugging down below. I felt a lot of pressure on my heart, I felt nauseous and my arms became really shaky. I was assured that this was all a normal reaction to the anaesthetic but it was still all very scary!

Next minute we got a glimpse of a tiny babies head covered in blood and white stuff over the screen and it was confirmed to be a baby boy, as Steve had suspected all along. He was then taken to the next room to be checked and woken up etc. Pretty soon we heard a couple of screams, and Dad was called in to see his little boy!

The video Steve took of these first moments are pretty magical. Steve says the way Marcus first opened his eyes, and looked at him, was exactly the way his Dad had looked at him just before he died...so the connection was immediate! He said to his baby 'Welcome Marcus to planet earth...it's PARTY TIME'. They cleaned Marcus up, with rubber gloves on, rubbing him with towels to further wake him, and Steve continued to turn the video of Marcus's birth into a comedy! (it is hilarious!). He asked if he was well endowed and was told he was about average, to which Steve said 'Oh' and they said maybe we should have said 'Yes'!!! It was also remarked when Steve called him Marcus...what happened to Sir Bishop Desmond Tutu then!!!? (the name we gave my bump throughout the pregnancy!)

Marcus was then brought in to see him and although I thought he was lovely and far more beautiful looking right away after the birth that I had ever expected, it was all still very overwhelming and unreal. I still being stitched up and feeling pretty ill. The main thing was that he was well, and he didn't need to go the the special care baby unit. His tiny feet were rather bruised from starting to come so quickley into the birth canal, and he kept his legs bunched up rather a lot in a bowl as breech babies often do, having less room in the womb that way up, but over the next week he healed and gradually stretched out (and boy what a kick when he's hungry!!!).

I was then taken to the place where people recover for the night. Marcus was put on me as much as possible. They call this skin to skin contact and they are very keen on this as it helps calm the babies heart-rate, and temperature and helps with bonding. They also tried to get him to latch onto me to feed and get some Colostrum straight away, but this was tricky for both of us. He did manage to and did get a bit though.

My was experiencing intermittent leg spasms (as I generally do) but it was really weird, because I couldn't feel them, so it was as though it was someone else's legs that were jumping about. Steve stayed till around 9 pm and then they went home to spread the news and celebrate with a take-out Chinese meal for two, which was enormous and which he ate for the rest of the week!

That whole night was a blur with no chance of sleep as it was so noisy all night. Gradually I began to feel and be able to move my legs again. At one point I experienced excruciating pain as the drugs wore off and my bladder went into spasm due to the catheter in there (now that was pain!). My bladder desperately tried to push the catheter out and I was given more morphine to alleviate this. I'm pretty sure my bladder leaked and the bed was then changed (I told them it was going to) but none of that was a big deal at all. I was also given a bed-bath and at some point in the early hours, I had some toast (I'm not eaten since about 10am Saturday morning!).


And so began a week of very little sleep and trying to adjust to having a baby, getting my colostrum to come, learning how to get him to latch on (it was a struggle at times), learning simply how to handle a tiny baby, nappy changing and winding (the staff were brilliant and helped me out all the time day and night at the touch of a buzzer, but still there were one hell of a lot of rules and too much pressure on me!). At times I think the only thing that kept me sane was the positive affirmations tape I had made and played to myself throughout the days and nights on my personal stereo through the headphones (no one knew and it did help!).


It was very tough, especially when you are trying to recover from surgery. I found it hard to sleep in the short periods at night when Marcus slept. It hit me just how much care I needed myself because there are times when I should be asleep but would lie awake with leg spasms (the room in the hospital was hot which did not help at all and I had to wear the operation stockings as well which made me even hotter!) or be woken with my bladder! I also need to eat well and eat proper food (Steve was brilliant bringing me in huge tuna or chicken salads).


Day 4 and day 5 were overwhelming with the sheer fatigue, pressure and the drop in hormone levels causing weepiness and the 'baby blues'. I felt as though I had taken on the world and felt really stupid for asking that of myself (though happy to have a healthy baby of course- the sheer extreme mixes of emotion totally do you head in!). I felt as though I had swapped a relatively nice life for one in which I was to suffer day and night and at times I still do!).


There was no day or night anymore just one long day, which was tough when you were in a room and caring for a new born 24/7. But I was lucky to have the help on tap and also to be in a large room on my own which was fully adapted with disabled facilities such as a bath lift!


Sometimes I felt very on my own, as Steve was organising things at home, trying to take business deliveries which often did not turn up, and trying to cope with bad migraines which often affect him at this time of year.

He usually unwinds after a big year of stressful scooter selling and repairing with the business when we fly out to the Florida Keys though at this time of year for a couple of months and rest, sunshine and swimming therapy in the Florida Keys though, and we still hope to go in early December this autumn for 3 weeks but that all remains to be seen! Some days I think this is realistic and others I think there is no way I will cope!

Also having me undergo major surgery and the worry about his tiny new baby, well it is not to be underestimated (causing sleeplessness and no doubt the migraines). Steve was at the hospital when he could be and when he was there is was brilliant with Marcus and learnt so much so fast, absorbing information like a sponge. I just needed him there more at times, for emotional support above all else, as it was so much to deal with in that room without him there!


Steve feeds Marcus with a pipette

On day 5 I did see a clinical psychologist, because by the morning I really didn't want my baby, and after a long chat he said that the main problem was that I was simply outside of my comfort zones in the way I manage my ms, and that I was hormonal and exhausted, so it was all pretty normal stuff to be feeling in a way. He saw no sign of clinical depression so no need for any anti-depressants. I agreed totally and was very impressed with the way he summarised everything and it was reassuring to know that I wasn't actually going mad (it was good therapy and helpful to know it was all understandable and made sense!)

It is just all the fears and unknowns for the future, how Steve and I would manage. My greatest fear of all was that I'd become so neurotic that Steve would leave me, but if anyone knows Steve that scenario is probably unlikely, and maybe I am totally underestimating my own strength and abilities there?


Steve tells me I have to stay in the hospital for another 6 weeks!!!

I found a plan was naturally coming together anyway. Offers of help from my best-friend's Mum, I could always pay my old Home-help to come in and prepare food for me or do whatever, social services were contacted to come to assess our situation, my parents were also on the scene. Gradually I realised that there would be a way to ensure life would go on and maintain my health as well as I generally do (with ms there are no guarantees anyway!). On day 6 I let the staff take Marcus off from 4 am and I got a good few hours kip before they returned him and felt hugely better for it!

I also saw my Neurologist on day 6, and asked to try taking Gavopentin for the leg spasms. I'm not yet allowed to take my bladder calming medicine because I am breast-feeding but the Gapapentin I am allowed and I felt it was worth trying to see if this drug could alleviate this annoying symptom. I also had to start self-catheterising because my bladder is retaining over 100 ml (maximum 200 ml). This is often a problem with ms and also after pregnancy, but I am also so glad to have got a relatively functional bladder back. I'm also taking Iron tablets for anaemia (due to blood loss with the mother of all periods!), and this is causing me a bit of constipation, just when was enjoying the relief from this symptom after having had my baby. So it's all still swings and roundabouts!


Overall the good news is that physically I am actually a bit better that before I went in...on my legs and with ms (maybe the hormone thing? maybe some kind of nature survival thing kicking in? maybe it will last? maybe it won't...who knows?). My Neurologist was pleased with me and she also said that I seemed a bit better than when I saw her the week before (less shaky and anxious I guess)! I have made sure that I got back on my feet and walked daily up and down the hospital corridor every day since day 3 as well, and in spite of the surgery I am doing remarkably well. I have got my figure back almost immediately. It was all baby, fluid and placenta in there! I'm having to ensure I eat and drink enough too so as to ensure my milk keeps coming and that I don't lose weight. (not always easy to find the energy to prepare good food and remember to drink but it is crucial so that is where I need the care myself!)

I've not needed antibiotics for Urinary Tract Infections either, which considering how prone I am to them, and considering what my bladder went through having a permanent in-dwelling catheter stuck in me causing pain and excruciating muscle spasms, I think this is pretty damn remarkable! I resisted the pressure of taking antibiotics to treat an Uti, towards the end of my pregnancy, and cleared it naturally, because I assumed that I may need them later after surgery when I weaker and run-down! But as with the whole ms deal, there is no predicting anything it seems, suffice to say that I am proud not to have succumbed to the pressure to take them straight away, and grateful to have needed them later!

It is all so weird. I get physically f***** but you just get on with it- most of the time!

Steve has bonded with Marcus so well, taking to him like a duck to water...just amazing! He took over for the first night on Saturday night the day I got back home (after a feed that went on for something like 3 hours to get Marcus to settle for a wee bit, so I got to bed at about 12.30 am and got about 7 hours - heaven- that night on and off- kept checking on my baby though- you can't just switch off!) and he handled this fantastically...using back-up new born baby formula feeds at night. He says he had a fab time at 3 am watching Takeshi's castle and giving Marcus a bottle! Then at around 8 am Steve went off to the Gym and I took over with Marcus.

People say no one can prepare you for the lifestyle change involved in becoming a parent, but in my case, being very AWARE AS A PERSON, I was prepared in a way for how hard it would be...and hence my trepidation and anxiety.

Also what people don't tell you is that although you may never get 8 hours uninterrupted sleep again, you don't need it as much (though it would be heaven!), because when you sleep you really do sleep!!! It is all a lot more efficient (or maybe I speaking too soon?)/

Our little boy is healthy and beautiful. I wasn't expecting him to come out so beautiful looking (but guess the caesarean helped there!). The best thing is that he really is thriving and doing everything a baby should!!!

For the first 24 hours he was too sleepy and tiny to get the hang of breast-feeding and they had to wake him every four hours to try to feed on the breast (and get my milk to come) and then give him formula with a pipette but now he feeds regularly during the day and all the time at night- or at least it feels like it!.

We are just taking a day at a time right now, but so far so good. Being premature it may take him a little while to establish a routine. Also the reason he feeds like mad at night is apparently because of nature. He knows this (~4 am) is the best time to stimulate my hormone levels to boost milk production...in the first few weeks. And although exhausting the breast feeding (and sustained hormone levels are actually protecting me from ms, so in a way he is HELPING ME TOO and making persisting with the whole breast-feeding lark worthwhile- it's also worthwhile because it is damn convenient during the day as well!). So this night, Sunday night I fed him till around 11 pm and got to bed, Steve finished that feed up with a bottle, I slept till 3.30 am and then took over feeding and caring so as to do the hormone stimulating feed!

Daddy sleeps downstairs and I sleep upstairs and we are doing half nights each in shifts and so far this seems to be working (if I need more Steve can do more!)

He validates, praises and enjoys him all the time, telling him how good he is and how little trouble he is! He always sensed he'd have a baby at around 50 (he's 49 now) and that it would be a boy (Could have told me like!!!). He calls him our 'tiny little visitor who just needs a little bit of help, and so far, he's been treating me like a queen too, with lovely meals, love and care, even spoon feeding me when I'm tied up feeding Marcus- ahhhhhhhhh! I just wish Steve could be here all the time, but of course with running the business too. In theory he was supposed to be taking time off but in practise it is not so simple!


I'm getting the hang of using the Internet too whilst breast-feeding, and typing with one finger and holding and supporting him with the other. It makes night feeds pass quicker to believe me. I'm a working Mum and having a life outside baby (business, friends, emails, message board!) is wonderful!

Switching on and off, sleeping between the feeds, I do find hard but I am trying to chill and rest instead rather than beat myself up about this! I am also trying to do the same during the day, but I do wish I could just adapt and sleep more during the day, just like Marcus does. I don't know why I can't do this, but I guess it is early days and there's one hell of a lot going on right now!


At present he is being fed on demand, but his Daddy is clearly still the boss and this phase won't last forever! Around 12 day after birth babies tend to go through a grown spurt and just feed 24/7 so I am preparing myself for that. With Marcus it may be a little later as he was a bit premature (bang on 36 weeks but a good weight at 5 lbs 7 Oz for that gestation). When he left the hospital on Saturday he weighed 5 lbs 5 Oz, but it is usual for babies to lose weight in the first week as they adjust to the lack of 'womb' room-service. Yesterday (Monday) he weighed 5lbs 5.5 Oz so he's gained a bit in two days!

Yesterday though Steve had to go out for the Argos delivery of baby things and to sort out business at his flat and I ended up doing way too much, handling emails, feeding Marcus, seeing midwifes, taking scooter calls. I ended up on the bed unable to move so I called my brother, Matthew (aka Sir Stan Ghost), who was up in Sheffield for the weekend and he came down to care for me, prepare a lovely chicken salad etc. It really hit me how I need back-up to care for me, if Steve is out or dealing with business calls if I am to care for Marcus. When Steve got back I tried to explain this to him but he took it all as a criticism and went mad with me. He thinks he can do three jobs, care for Marcus, care for me, and run the business from my house now! I don't think that is sensible of realistic. He doesn't realise that he isn't superman and that the stress comes out and tests his patience and changes the way he is with me (stress and lack of sleep are not a good combination and make you very short-tempered) . I agree that he is the best man to run the business because no one can repair and sell scooters as well as he can, but if he's making more money that way then surely it makes sense to get me the backup I need because with his running the business (being the success he is) we can afford it!

Anyway I ended up really upset and neurotic and totally self-destructed again, because of this argument and the fact that I couldn't simply relax and sleep around when my baby sleeps. When I get overtired I am impossible. So I ended up dragging Steve down and doing his head in- my WORST FEAR- simply because. I ended up wishing I'd not had my baby again. I must admit I was impossible! It all just got too much for me again!

What I learnt from yesterday is that I must learn to adapt and relax totally when Marcus sleeps, and also if I need extra back-up a few mornings a week then I must arrange it. So I think I may have to take charge there and employ my old home-help to makes me salads, huge soups and if necessary feed Marcus if I need to sleep and Steve is taking calls or nipping out!

The whole running the business from my house now I find a huge adjustment, but I'll have to learn to switch off and let Steve get on with it, turn the phone off etc., be more normal and flexible. Stressing out and winding myself up only makes me 1000 X worse, and my legs are a load stiffer today already. Steve is just so fit and strong had such high standards that it is impossible to keep up with him. I have limits and he is making me feel as though they are my fault right now (but after my performance yesterday he does have a point.

It scares me that I am the main problem, it's me, but I need to give myself a chance to adjust to these huge lifestyle changes and work out what is realistic. Last night I though Steve was going to end up leaving me I wound him up so much just trying to work out a plan for how things were going to work, and also beating myself up. We did shifts again last night though and I did sleep better. It is all just such hard-work, though not to Steve! The best thing Steve said yesterday was Marcus comes first now, and you come second, and I am so happy that this is the way he feels, because that is the way it should be! Whatever happens Marcus will be loved and cared for and that is the main thing.

So onwards we go with this journey in life. Everyone reassures me that this is the toughest time and the totally disrupted nights won't last forever, and that I will adjust and cope, so I'm just taking things a day at a time and believing them!


Thanks for all you support, greeting, love and presents sent for Marcus. My brother printed them off and gave them to me in hospital and they really helped...though I never intended to make so many of you cry tears of joy!!!

All the best

Hugs & Smiles

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.

So pleased to read of Marcus's safe arrival. Had been wondering about you and praying for you all. congrats to you and Steve. You all seem to be doing so well. All the best Sue

1. Posted by Sue Turner on November 3, 2005

Congratulations! What a beautiful baby! Happiness and good health to Marcus, you and Steve.

P. S. I know how busy you must be so thank you for taking the time to update us on the great news.

2. Posted by PF on November 3, 2005

What a beautiful baby and such an amazing story! You're such a strong person - Marcus definitely has an amazing mother! I'll have to share the story of Ella's arrival with you sometime - it was definitely a long road and I had some complications afterwards, but it was totally worth it! Just looking in her eyes melts my heart!

Congratulations to both you and Steve - Marcus is adorable!

3. Posted by Lisa on January 17, 2006


(30/10/05)

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