Jiving on Regardless

{October 13, 2007}   My week

Have had a full on week this week which means that a few decisions I made last week have helped.  One such decision was to cancel my degree course. I am disappointed as I was looking forward to getting stuck into it but having sat down and thought it out properly, which receiving all of the course materials prompted me to do, I realised that it was too much to take on right now and could be detrimental to my health if I get overloaded and too stressed. The right time will come for me to do it but I have realised that now isn’t it.

One other reason why I was reluctant to focus all of my time and energy on a degree is because I have started West Coast Swing and I love it with a passion I haven’t felt before.  I am enjoying it more and more and want to use the little energy I have left after caring for my family to spend doing that.

Tomorrow I am on a four hour workshop, the first of many I am sure, and can’t wait.  I finally managed to convince my husband he could do and he is proving me right.  He is picking it up incredibly quickly and is such a perfectionist I am sure he will have it sussed fairly quickly.   We are both loving it.

Other than dancing I have spent this week doing family stuff.  I am thoroughly enjoying looking after W on my own again. He is such an easy baby to look after, preferring to potter around playing with his cars than doing anything with me. He is so lovely to be with too, despite and horrendous temper which I am working hard to tame.  I actually realise that I am now finally getting to know my baby properly. I don’t want to dwell on it too much as it makes me sad to think that I let our attachment simper, although I know it was through uncontrollable circumstances.  I am glad to have my baby to myself finally.

Mind you, here I am calling him ‘my baby’ and this week he moved from his cot to a big bed.  I bought my boys some lovely bedroom furniture from Ikea (Mammut range in blue) and spent all of Thursday putting it together on my own! It looks fab and they are now out of the toddler bed and cot and in single beds. My oldest wanted to share with his brother so they are now in the same room and are soooooooo cute.  They wake up and I can here them playing and chatting to each other.  I love it, it is exactly how I imagined and wanted them to be at this age.  We are fortunate to have the space for them to have their own room if they want it but it given that they already have a playroom downstairs and hence don’t play in their room, they don’t need space for toys and therefore should need to have separate bedrooms at this age. One day when B is older he will want his own space but in the meantime my husband and I are reclaiming the fourth bedroom.  We are not sure what to do with it yet but I am sure we shall decide soon.  We already use a bedroom as a study and therefore don’t have a spare bedroom so we shall probably go traditional and turn it into a guest room which will be nice, if slightly under utilised.

Anyway, I am banished from the lounge this evening as the Rugby is on so I am going to do some virtual Christmas Shopping.  Have already done over 50% of my shopping – how organised is that? 🙂

Right, credit card to the ready…


{October 7, 2007}   My Story…….so far

This is a long story so you will need a cuppa before you read!

Winter is drawing near and this has brought up some memories which I feel the need to write down.  I need to see, in words, how things have changed.

10 years ago I was a 21 year old girl.  I didn’t appreciate it or realise at the time but I was beautiful, slim, gregarious, fun, energetic and best of all loved by my then boyfriend N.  Things were good.  I had escaped an abusive and hellish childhood, I had survived a nervous breakdown, suicide attempt and rape and had set up my life as an independent, successful women.  I hadn’t been to university but I had worked my way up in an organisation to a good position for my age and level of education.

Then things started to change. I started to get more and more ill.  My weight was plummetting, my energy levels were dire and I had heavy rectal bleeding and constant stomach ache and diarrhoea.  I went to the doctors and was told it was Irritable Bowel Syndrome (IBS) and stress and it would go.  Two years later and we were planning our wedding and I was still deteriorating.  By the time we married I had gone from a healthy 8 stones to 6.5 stones and was very poorly. I had contracted the Flu which was an epidemic in 1999 and could literally not speak on my wedding day, having lost my voice, looked very frail and the day before couldn’t even get out of bed.

After the wedding things went from bad to worse, my family life was very stressful (mental father who tried to kill my Mum and harm my brothers and was eventually sectioned for 18 months – the drama that came with this was better than an episode of Eastenders!).  My the end of 2000 we moved to London to escape the chaos and start our own lives and the day we moved, Friday October 13th 2000, I was diagnosed with Ulcerative Colitis and had to go to the doctors that week for steroids.

Throughout the next seven years I was never able to get the damn UC under control.  I was on massive doses of steroids and Asacol, I blossomed to 10 stones and suffered the horrendous moon face.  I suffered from Associated Inflammatory Arthritis and had many periods where I was housebound and barely able to walk as far as the bathroom.  I had much time off work and life was fairly difficult at times.  Still, we had a great time in London and inbetween the bad times we had many good times.

In 2003 I gave birth to B and when he was six months old we moved to Cambridgeshire. Pregnancy had been hard because of the UC but taking care of him afterwards was even harder.  B was born with a condition which meant his anus was partially covered with a ring of skin meaning that he couldn’t emtpy his bowels properly and it was extremely painful. It was horrendous to watch him go through and we spent many many hours with me on the loo in agony with UC and him sitting on my knee sobbing because of the pain of his condition.  It was heartbreaking but kind of bonding at the same time.  We got through and he eventually had a procedure to rectify his problem and is now a healthy four year old.

In January 2006 I gave birth to W after an horrendous pregnancy during which time my UC had been in full flare up and I was on steroids.  The steroids induced Gestational Diabetes which also meant I had to inject insulin.  I felt awful all of the time.  By the time W was born I was getting worse and when he was six weeks old was taken into hospital through A&E.  Here started an horrendous nine months during which time I was unable to take care of my children on my own and spent 90 per cent of my time in bed and a lot of that in a hospital bed.

My husband thought I was going to end up dieing on him, he was so worried, and I was depressed at the though of having my colon removed.  The consultant promised to try every drug possible before he did this but my options swiftly began to run out.

I initially had intravenous steroids which did nothing.  At this point I told my consultant that I never ever wanted to touch steroids again because they did nothing for me apart from make me have to live with awful side effects.  I have never been on them since and shall never go on them again.  I then went through the list:

Methetrexate – bad reaction, sickness and diarhoea

Azathioprine – bad reaction as above

Finally, in November 2006 I went into hospital for a week to have Cyclosporin intravenously for 16 hours a day.  Finally there was hope as things started to improve.  I went into a better state of about 90 per cent remission.

It took me a few months to get to a point where I could walk again, and have the energy to care for myself properly.  Finally in January I felt better and knew I needed to get fit again and start living again.

One day I decided I wanted to dance and looked for a local class on the Internet.  I found one and it was on that night so I took my self over there, on my own, and started a journey that has been fascinating and opened my eyes to passion and possibilities I didn’t know possible.

I have since been dancing Modern Jive and have, as a result, taken myself out of my confort zone many times.  I have learnt that to live my life I have to deal with my colitis more publicly.  I have learnt to be more comfortable with public loos, I have been on weekenders where I have had to share a place with people I don’t know well and I have generally allowed my enthusiasm for dance to overcome my anxieties of having this illness.  I feel much more confident and purposeful for it. I am back down to the weight I was at 21 and FULLY apreciate my new found figure and looks.  I don’t take anything for granted nowadays.

This year has seen many ups and downs as dealing with remission has its own issues. I have come through it, once again and continously with the support of my lovely husband and kids and despite some tough times we keep going.  Throughout it all dance has enveloped my life and this month has seen further changes.

A few weeks ago I decided to undertake the second part of an OU degree course I had started in 2002.  I also decided to start learning a new form of dance called West Coast Swing (WCS). In additon my consultant had advised me to see if Infliximab would get me in total remission and allow me to come off the Cyclosporin which I have been on for six months longer than I should have been.

I figured that if the Infliximab worked I could do everything and go for it whilst taking care of my family and becoming a full time Mum to my 19 month old with no support from a nanny!

Unfortunately the Inflximab hasn’t worked and although they are holding out hope for it yet I don’t think so.  Once again I have been left with the unenviable task of assessing my life and ensuring that I do the best for myself and therefore my health and therefore my family.

My passion and saviour from the depths of depression and total emersion into UC is dance.  I have now discovered that this can move onto an even higher plain than previously as I have fallen in love with WCS. I have now decided that in order to put my energy into that, which will help my UC in terms of keeping me physically fit and mentally healthy, I am not going to pursue the degree course and have cancelled it.

I am now going to be a full-time Mum but dedicate many hours to my dancing, two hours a day at least! Yes, I am obsessed but I feel it can only do me good.  If I end up in hospital again my choices will be taken away along with bowel.  My dancing may come to an abrupt end and until such a day happens I intend to make the most of it and be the best that I can be and live in hope that this will be enough to keep the operating table away.

I have written this for me as it’s been a long couple of years and I needed to see how far I have come.  I think I have come a long way and can 100 per cent say that I am happy, fulfilled and filled with hope for a good future. UC doesn’t mean the end of anything. In fact, as far as I can see it can open yours eyes to wonderful things and allow you to live your life without taking the important things for granted and thus see and live that which is around you.  UC and other chronic conditions can help us open our eyes an appreciate, something that healthy people never get he opportunity to do.

I feel better now.  Off to practise my spinning……………………….

et cetera