Jiving on Regardless

{March 31, 2007}  

That last few days have been busy, busy, busy.  Yesterday I had to go here, there and everywhere doing various chores and errands.  I have this uncanny ability to do very little for days and then run around like an idiot for a couple of days. I have no idea how to pace myself.  I have got slightly better at it over the years but I still have manic episodes where I go, go, go – this weekend is one looking like a manic episode.

Yesterday I had a lovely day with my children.  I took my little one to get his first pair of walking shoes – so cute, but so flippin’ expensive, £26 for a pair of shoes that shall probably only fit him for 4-6 weeks, still, needs must.

In the afternoon we went to see my Mum at her work place. She works in a therapeutic school for young boys who can’t be educated in mainstream school because of behavioural issues.  It is the most astoundingly beautiful building, set back about a mile from any road with stunning grounds and views.  At some point it was an amazing country house.  They have invested in a load of chickens chosen on the basis that they remind them of and have therefore been named after various members of staff.  I have no idea what this says about my Mum as hers is the ugliest looking chicken I have ever laid eyes on (being of country bumpkin origin I have admittedly come across a few in my lifetime – not something I broadcast, normally!).  I have always considered my Mum to be beautiful and somewhat attractive but clearly others don’t 🙂

Watching my Mum in her job i have discovered where certain elements of my personality come from that I haven’t realised before.  She is the most unassertive person in her personal life but at work she is very assertive, borderline bossy bitch but carries it off with a big smile and bucket loads of charm.  Something I too have been accused of but had never imagine for a minute I had learnt it from my mother.  As time goes on it becomes apparent that not only did I inherit my appearance and the dreaded Ulcerative Colitis from my Mum but a lot more besides – not sure if this is a good thing yet 🙂

After my Mums it was off to my sisters for a couple of hours then back home to give the kids their tea then imediately off out to drop some stuff off to my best mates then onto a freestyle – you see, mad, this took in about 60 miles in one afternoon.

The freestyle was not the most atmospheric I have been too, although it has to be said that my experience is very limited at the moment, but it was okay.  Fortunately there were quite a few people I knew there and also a couple of excellent dancers I didn’t know.  I had some brilliant dancers and feel like I learnt A LOT of new moves.  One guy was particularly excellent and showed me a lot.  I like dancing with very confident good dancers as they push me on and teach me at the same time.  I pick things up quickly and once this type of dancer realises that they go all out to show me as much as they can. 

This week has seen me lifted a lot.  For some reason five people I have danced with in the last week at three different venues have decided to lift me.  Having never experienced this before at first it felt very alien although good.  I like lifts, dips and drops, they all seem exciting and a bit daring.  The only thing is three women have commented on me being lifted and told me to ‘be careful’ however, each time they have then headed off onto the dance floor never to elaborate on this warning. I have no idea what they mean.  I assume I need to be careful of being dropped(!) but would also hope that a man wouldn’t be stupid enough to attempt lifting me unless they felt they could. I shall definitely have a word with a couple of people this Sunday and find out what I need to be careful off in more detail.

This afternoon we are out shopping and then off to a 60th Birthday dinner for my MIL.  It is not often we get together with my husbands family as his sister died six years ago and his parents don’t like doing the ‘family’ meal thing cause it is too painful to acknowledge who is missing.  However, we have managed to persuade them that on such an auspicious occasion we ought to and the grandchildren, of which there are four, will love it.

Tomorrow is my normal and by far my best dance night – I can’t wait.

 I am going to briefly mention my UC but only because I feel I ought as it is the primary point of me writing this blog.  Yesterday it was horrendous, making my busy day far more stressful and demanding than it needed to be.  However I have consciously not allowed it to play on my mind or become foremost in my day – I have basically done my best to ignore it.  UC doesn’t like to be ignored but I am absolutely determined that this time it is not going to knock me down.  Funnily enough last night I didn’t have a twinge. This was probably because I had nothing to eat from lunchtime onwards but it worked.  I just took some glucose tablets with me and they kept me dancing. I feel very tired today but don’t care as it is a result of doing something I love not because I am ill.

In the words of a lady I adore, Audrey Hepburn in My Fair Lady  “I could have danced all night…”


{March 29, 2007}   Beautiful Children

My son said the loveliest thing to me today “Mum, you are so special and beautiful and I love you”. Isn’t it amazing how a compliment from your 3 year old child goes further than any other kind of compliment? My little man is a sensitive little soul, he is so thoughtful and kind and thinks things way beyond his years. This morning my kids have done nothing but giggle at each other and it is the most amazing sound. They have definitely ensured that I am in a cheery mood today.

So far today my UC has been much, much better. I have no idea why that is. Probably a lot to do with the fact that I am less anxious today, either that or something to do with the vast quantity of sponge cake I ate last night. I definitely over indulged but had never considered sponge cake to be good for me. However, I am definitely happy to keep testing this phenomena to see if the theory is correct!

The weather is miserable as outside but I am feeling very chirpy today. I have come to the conclusion that I have spent far too much time worrying about all sorts of nonsense over the last week and it is time to let it go, so that is what I have done. I am not one to dwell on things too much, a few days and then it is over. I am so glad it is over as I was getting seriously fed up of myself.

Yesterday I slept for most of the afternoon which definitely helped. Fatigue knocks me sideways and as I have said before definitely has an effect on my mood. I have tried everything to combat this but until the disease goes into remission or is cured through surgery there is not much I can do, other than rest properly, eat as well as I can and take iron when needed. I have concluded that you just have to keep pushing and keep going.

This weekend is going to be a busy one although not as busy as I would have liked. Ideally I would be heading off to a freestyle in Daventry which doesn’t finish until 3am. I have a feeling I shall be missing out on a good night but unfortunately my husband has to run 22 miles on Sunday so I would not be able to head home to stay in bed all day. There is no way I could get in at 5am and then get up at 8am to have the kids on my own all day – wish I could though. Instead I am heading off to a more local freestyle in Peterborough on Friday night, it is only on ’till about 12.30am so it won’t be too late, plus I can lie in on Saturday. Sensibly it also means I shall be able to dance on Sunday night at my normal class night.

Apart from dancing I am also going to my MIL’s 60th birthday dinner on Saturday afternoon and shall spend some much appreciated time with the kids and other half. All in all it should be a good weekend this week.

Nothing much else to report today, other than today is a good day. I am feeling on top of everything. I have even managed to clean my house from top to bottom and am pretty sure I shall be able to manage with no sleep this afternoon – things may be on the up.

{March 28, 2007}   Niggly Symptoms

First of all to tell you about last night.  I went dancing and had a good night of it despite feeling exhausted and rather ill.  I didn’t dance as much as I would normally but quality over quantity was definitely the case.  I had a few really good dances during which I learnt a few new moves and got to work on my posture and some other bits I wanted to get right.  One guy, who incidentally is in his 60’s, did a couple of lifts with me. Completely took me by surprise and was kind of frightening and exhilarating all at the same time.  I am sure I looked as graceful as a sack of spuds but grace comes with practice.  It is always good to find people who are willing to push you on with different moves – I can tell I shall love doing better lifts and drops when I grow in dancing skill.

This morning is pants again.  Not feeling too bad in terms of mood, well, I say that, I feel a bit tearful but am trying to dismiss it – it is probably just down to fatigue.  My UC has been very painful again this morning and I have been bleeding heavily.  This in itself doesn’t tell me anything I don’t already know – it is very clear that things are getting worse, but despite bleeding almost every day for six years it is still the one thing I can’t get used to and I find very disconcerting, especially when it becomes as significant as today.

I guess that psychologically the sight of blood represents injury and illness so points out more clearly that things are not right, it is frightening despite being a regular symptom.  My proctitis is particularly painful and just sitting is incredibly uncomfortable.  Dealing with the pain is taking its toll on the rest of my body too as I am very tense and my lower back pains are coming back with a vengeance.  I have found that daily stretches and of course dancing do help with this pain but it is not enough, it merely stops it from becoming crippling.  Unfortunately there is not a lot else I can do to stop my body from tensing up as I can’t remove the pain which is causing the tension.

I spoke to a friend with UC last night and we were both saying that focusing on making it to a special/fun occasion really helps.  My next big thing is the Southport weekend.  I am determined to make it there and I am sure that this focus is stopping me from giving into my deterioration.  I would definitely advise that anyone with UC who doesn’t already do it, to make plans.  I know that this is really hard as we frequently have to cancel and as a result end up losing money but if we stop planning ahead then we are giving up on enjoying life, that would be a terrible thing to do.

I have a few errands to do this morning and then I shall have to go to bed for a couple of hours.  The fatigue thing is such a downer.  It is really starting to hit now which is probably why I feel quite emotionally sensitive at the moment – this stupid illness has so many curses that medicine can’t quantify or explain.

I am resolved to not going back to the miserable existence I had last year – wish me luck!

{March 27, 2007}   Ulcerative Colitis and Diet

Today I am feeling much chirpier but having a pants time with my UC.  It’s been one of those mornings where I didn’t think I would make the school run, but I did.

I didn’t sleep well after 4am as my stomach was hurting and i knew that if I moved it would be the start of a couple of hours in and out of the bathroom so I lay as still as I could and tried to sleep with little success.  I finally got up just before 7am and as expected my morning started badly.  It has been really painful today, i’d say about a 4 on a scale of 1-10.  This doesn’t sound so bad but I reckon my 4 is a non UC sufferers 7.  I know for sure that prior to having UC if I had woken up and spent a couple of hours like I have this morning there is no way I would have made it to work I would have resigned myself to a day in bed pleading food poisoning or something of that ilk.  Unfortunately for those of us with UC this is a better day and thus we get up and we get on.

Actually having children helps this.  I can’t not get up when the kids want breakfast and need to get ready for school.  As much as they make life harder in some respects they definitely keep me going, literally and emotionally.  I just find mornings particularly difficult when they are at their most demanding in terms of needing me to do things for them.  Since having my youngest I have rarely managed to sit with him long enough to give him his entire bottle.  This he hates as he loves his morning cuddle with a bottle.  Normally after two minutes I can’t stand the pain anymore and I have to go regardless of his screams which is very hard.  Fortunately now he is a little older, as much as he dislikes it, after a little moan he gets on and feeds himself – I still feel guilty though.

I think things are much worse this morning because I ate more yesterday.  I suddenly felt ravenous after days of eating like a bird. Mind you, I didn’t exactly indulge in a banquet.  My days food intake consisted of:

Breakfast: a small bowl of Special K and a glass of Cranberry Juice.  I try to make myself have this regardless of how I feel as taking tablets, particularly Cyclosporin on an empty stomach does me no favours and I find that I really need the iron in Special K.

Lunch: small bowl of carrot and coriander soup and one slice of wholemeal bread.

Afternoon Snack: I don’t often have a snack but I was starving yesterday so had a wholemeal bagel and a fruit corner yoghurt (I try to eat one-two yoghurts a day because after years on steroids it is likely that my bone density has been affected and I need the extra calcium to prevent later disorders such as osteoporosis)

Dinner: Couldn’t face dinner but had some brie and crackers a bit later on.

So, like I said hardly a feast but clearly enough to make things worse for me today.  I need to try and eat well today as I have a dance class tonight and will need the energy.

Over the years I have tried all of the exclusion diets going to see if diet has any effect on my UC.   I agree with the medical profession that diet has no bearing on the disease.  Some people find that certain foods irritate their bowels but I think that this is no more or no less than for the population in general so in terms of the ulceration in their bowel it makes no difference.   The only difference diet makes for me is that clearly the more you put in the more has to come out and this is what damn well hurts! Thank goodness I don’t have a massive appetite.

Going to spend today taking it easy so that I can enjoy tonight, if I make it out.  Unfortunately the best and only thing to do when feeling this bad is to rest, grab a hot water bottle and hope that it passes.

The question on my mind today is can my house cope with any less attention?  It looks like a bomb has hit it and I can’t stand having an untidy house – ah well.

Having a crap day today.  It’s not like me to be so flat but it happens occasionally.

Went dancing last night and to be honest I didn’t really enjoy it.  Firstly I wasn’t feeling great and felt like throughout every dance I was fending off an imminent attack.  Secondly having been socially reclusive for such a long thing I have forgotten how much men misinterpret things.  Basically I have discovered that a lot of men will interpret something sexual in a dance.  I really don’t like it. Fortunately there are a lot of experienced dancers at my class who know better and just dance and teach me moves, these I like, they appreciate the ‘just acting’ thing. Unfortunately there are too many who want to look for sex in everything they do and I hate it.  After a chat with a mate I realise that some of my dance habits (I have only been doing this for 8 weeks so am yet to learn the subtleties of dance, although learning quick!) are perhaps open to misinterpretation.  Just little things like maintaining contact, I need to use less contact – this is a security thing when you are new to dancing but can clearly be misconstrued as inviting physical contact. Also my eye contact.  I have only just become comfortable enough to look into peoples eyes at all and now it turns out I do it too evocatively – there is no winning, but I shall persist with it and try and get it right.

I have really given myself a hard time over this as although I am very friendly and outgoing and at times flirty I really am not ‘that type’ of girl (clearly, as I have been with my husband for 9.5 years – faithfully!).  I don’t like the thought that I might be projecting what I see as a bad image of myself.  Anyway, although still feeling a little tainted I will get over it and just massively adjust the way I dance, hopefully without effecting my dance skills (limited that they are) too much.

Aside from that my UC has been playing up loads today (probably not helped by my anxiety).  I decided that as it is such a beautiful day I would take the kids to the park.  Our local park is only a ten minute walk away but with things as they are currently this is too far to walk with no public loos around.  With this in mind I collected my oldest from preschool and decide to drive down the the Riverside park.  It is beautiful there with the river, loads of ducks, boats and some great play areas for the kids.  In addition there is the very important public loos!  Granted they are the most horrible public loos, but a loo none the less.  So, I get the kids in the car, head on down there and to my dismay (at that moment anyway) the loos are being rebuilt and refurbished.  This is fantastic really as we spend a lot of time down there in the summer and the loos were grim, grim, grim, but for today it was a bit of a nightmare.  Of course the kids were already there so there was no going back and I had to take them.  This was not a huge problem but if I know I can’t get to a loo when needed I spend the entire time very anxious and unable to relax and enjoy myself.  I ended up spending 40 minutes playing and then heading home.  It is so horrible as I was actually fine but it is that thought that I might not be as when that wave comes over you there is no stopping and it is horrible waiting for it to happen.

Well, my oldest is whinging that he wants to go on the Cbeebies website so I had better go.

Hopefully my cloud will lift soon…….

{March 25, 2007}   Sundays

So, the clocks went forward today – just to confuse my already very confused little brain.  For some reason clocks going forward and backwards make me completely live up to my hair colour and I become the stereotypical bimbo.  This morning the kids got up at 7.30pm – great, or so I thought until my husband pointed out that this wasn’t some miracle morning but that he had actually adjusted the clocks last night and hence really, to the kids, it was still 6.30am and I had lost an hour – as if I haven’t got enough time problems without losing an hour! To make matters worse he hadn’t had the foresight to be as efficient as he normally is (after ten years he knows me well) and he hadn’t changed my watch – to be fair this is not an easy thing to do when it lives on my wrist!

There I am at 8.30am according to my watch wondering what the hell I had been doing for the last hour as it seemed like a bloody long hour – of course, it was in fact 9.30am – duh!

Anyway, one positive thought I had around all this was that today I was an hour closer to dancing tonight.  This is the very weird thing about having started dancing on a Sunday nights, suddenly Sunday nights are the highlight of my week – that is right, Sunday night the previously horrendous evening when all I would do was mope about apprehensive about the week to come – how things change when you do something you love.

Anyway, whilst I wait for 7.30pm to arrive I have had a very nice day at my Mums.  As previously mentioned my husband is currently training to run the London marathon and today he had to run 19 miles.  Rather than hang around the house with the kids on my own I went to my Mums.  Now, going to my Mums is no ordinary experience on account that I have five brothers, two sisters and 4 nephews and a niece who are guaranteed to be camped out there on a Sunday.  Absolute chaos and more than I can bare at times.

Today wasn’t too bad, there were just four brothers (on account of one now residing slightly too far away for a Sunday visit in Sydney Australia) and three nephews (my sister’s kids) but no sisters today which was kind of a good thing as a few hours of them and I come away feeling like I am going sightly mad.

My brothers are great.  They range from 13-24 in age and are hilarious.  Mad as a box of frogs but great.  The two youngest have just clubbed together their illicit earnings from selling sweets at school (yep, Jamie Oliver may have revolutionised school fayre but he has also revolutionised the earning power of kids who have got the wherewithal and gall to sell sweets to their peers for astronomical sums of money – of course, being a responsible parent I can not possibly condone this behaviour but between you and me I find it hilarious – they earn over £100 a week, how many 13/15 year olds do you know who can do that in the school playground!).  I digress (as usual).  I was getting to my original point that they have bought a PS3 this weekend.  The older boys sadly came round just to play it.  So, I had four lads extolling the virtues of this new console which I have bugger all interest in – despite the graphics being ‘amazing’ and the functionality and look of the thing being ‘wicked’ and the control thing being ‘bob on’ 🙂

All in all this rendezvous to mothers cheered me up no end as my colitis was icky this morning and I didn’t think I would make it up their soundly (she lives 40 mins away from me).  Things have settled down a bit this afternoon so hopefully I shall be okay this evening.

Had better go and finish making the dinner.  Have just got Snow Patrols album from my bruv so am indulging in some obsessive listening – once I decide I like something I wear it out listening to it.

Until tomorrow…..

{March 24, 2007}   Sugar Hit

Well today has been nice.  Me, my husband and two boys spent some much needed family time together.  Our local gymnastics gym opens its doors to toddlers on a Saturday morning and they get to play on all of the gym equipment as well as some added soft play on the floor work area.  The kids love it – and a lot of Dads too – and my youngest has just started walking confidently so he had a wail of a time exploring all of the different pieces of equipment and climbing onto everything.

My colitis has not been too bad today although I have had really bad lower abdomen pain all day.  My inclination this morning was to give into it and sit and do nothing all day but actually, getting out and about with the kids helped me forget about it, well, put it to one side and I feel much better now.

I went to bed this afternoon with the intention of having a short nap.  I ended up zonking out for two hours and not even waking up properly when my one year old came in the room and jumped on me.  My husband promptly removed him and I fell back into a deep sleep.  I am guessing that this has a lot to do with the fact that I have had very little to eat over the last few days living on a couple of bowls of cereal a day.  I have eaten three small meals today (including a MacDonald’s – well, the kids wanted one!) but am now paying the price so am in for a bad night.  It is such a nightmare, I need to eat in order to have the energy to exist and get on with things yet if I eat I can’t get on with things as I end up living in the lav – what a life huh?! Still, it could be worse.

I am now, stomach prevailing, going to watch Casino Royale with my other half. He hates it as nowadays I can rarely sit through an entire movie without falling asleep but we have discovered that providing it is full of action then I am okay.  I can’t stand namby pamby films – give me a good bit of Scarface any day! In fact, it is interesting this (to me anyhow).  I am naturally a very placid and gentle person. I can not stand violence and would not tolerate any kind of violence in my life for a minute and I hate guns to the point where I don’t even allow my children to play with play guns or to even imitate having them – awful things.  However, like everyone, particularly someone chronically ill I guess I hide a lot of anger.  I have noticed that this comes out in my taste in films and music.  I am a sucker for violent and action driven movies and I love hard core gangsta rap – everyone who knows me finds this very weird, particularly the rap thing as the way they talk about women particularly is definitely against my principles – I clearly have issues here 🙂

I also very rarely swear in everyday conversation but when angry or annoyed I can’t help but use every expletive going. Basically, if I tell a person to fuck off then they know I am annoyed (although this is short lived as I am not one to hold grudges).  I am sure I have a mild case of Tourettes when angry as I really do come out with the worst language possible, people on the receiving end are always completely taken aback. Mmmmmm, having just written this complete load of crap down I am beginning to wonder what the hell I am on tonight – it’s glucose drinks you know, had one earlier to perk me up and they send me over the edge, it happened last week at dancing too.  Sod caffeine, alcohol and narcotics, give me glucose and I am high as a kite………definite issues..

Off to indulge in some James Bond ogling………..

PS – I am currently reading Wicked (recently made into a musical).  I am a sucker for fantasy books and kids books.  Anyway, learnt a great new word today – phantasmagorical.  It means surreal or surrealistic – definitely an appropriate word for my mood today.  I am definitely in a phantasmagorical mood.

{March 23, 2007}   A memory of Easter

This writing stuff is getting a bit addictive, probably because it is somewhat cathartic to get my thoughts out of my head and into words.  Actually, this is hugely stimulated by the fact that normally I spend every evening waffling on to my husband about this, that and the other.  In the last four months he has been training most nights in order to run the London Marathon in April so I have found myself with no ear to batter and thus a need to purge my thoughts elsewhere – welcome to my waffle 🙂

It’s three weeks until Easter and I have been planning what I want to do.  I am quite the planner it has to be said but Easter has loomed large in front of me for a while now as a time I should make the most of.  It didn’t dawn on me until this morning why.  I am now guessing that it has a lot to do with the fact that last Easter was appalling, and for the first time I feel a great need to get this little episode of my life into words – feel free to quit reading at this point as this could be a long one!

At the end of January I had my second baby boy, at home with no pain relief.  I don’t tell you this to pay homage to my own amazing feat of nature (although it felt like it was worth paying homage to at the time!) but to show why this time was stressful, as if having a  newborn isn’t stressful enough, and also to demonstrate that my pain thresh-hold is significantly higher than most.  Any woman who has been through labour will appreciate this (and any bloke that has watched it actually!).

From the day that W was born things went from bad to worse.  Fortunately he was and still is the easiest child to manage and has always taken everything in his stride – thank goodness.

My colitis had been dreadful throughout my pregnancy but afterwards got much worse.  This was probably largely to do with the fact that my body was totally and utterly knackered after having had a baby and then caring for a newborn. Just before Easter I was told that they would need to admit me for IV prednisolone (they can give larger doses through IV) and that I would be in for a week.  However, as Easter was coming up they couldn’t admit me until after. As I have previously mentioned in my blog, when consultants are on holiday everyone has to stop being ill! My consultant advised that if I couldn’t cope over Easter then I was to come in through A&E.

By Easter morning I honestly thought I would die from the pain.  As we have established, my pain threshold is fairly high but I was in agony.  We were due to go to my niece’s Christening that morning but I told my husband that I could no longer cope and had to go into hospital. I persuaded him to take the kids to the Christening and I got my Mum to drive down to take me to the hospital. It was an agonising 30 minute wait for her to get here – by then I just hoped to pass out so that I could go through the whole experience unconscious – this wasn’t to be.

What a pants morning that was.  The A&E SHO left my hands bruised and in agony after his pathetic attempts to insert a drip, as if I wasn’t in enough pain.  After an hour, which was pretty swift, I was moved onto the Emergency ward, where I was to spend the next 48 hours (a result of it being Easter and nothing happening). At this point I was heading to the loo over 8 times an hour – an absolute nightmare.  I do remember that an old bloke was in a bed next to the loo and I just felt mortified that every-time I made my way there he said hello to me – he must have wondered what the hell was wrong with me, or, why I didn’t just stay there. I would get back to my bed and within a minute be trotting back again.

I will never understand why pain relief has not been developed for IBD sufferers.  The only pain relief (for this and anything else) that can be taken is paracetamol as anything stronger irritates the condition and makes it worse.  Paracetamol isn’t worth the effort of taking as it does absolutely nothing for pain management once things are that bad.  The only way to get rid of the pain is to get the inflammation under control which is no quick thing to undertake.

After two days I ended up on the old folks ward for 24 hours (no other beds) and that was like being placed in a kind of hell.  I felt so sorry for these elderly patients who had no help and no family. They were just dumped in beds and left as the nurses didn’t have the time to give them the compassionate care they needed.

Fortunately come the Wednesday the consultants were back from their hols and I was able to use my husbands insurance to get a bed on the private ward.  It was like going from living in a slum to a five star hotel, absolutely fantastic. I tend to have all of my treatment on the NHS as I wouldn’t get any better treatment privately.  I would still have the same consultant and I can actually see him more regularly and at a better time through the NHS. I have to say that where I am now the NHS Local Health Authority has the best Gastroenterology department I have known (I have been in four, including a major teaching hospital in London which was horrendous!).  I have my main consultant, another consultant who I can see if Dr D is not around – both are lovely and fantastic, they always make me feel very comfortable and explain everything.  I also have a fantastic Specialist Nurse who is on the end of the phone or at the hospital whenever I need her, she is brilliant.  There are also the amazing clinic nurses who always know my name and ask me how I am  – they are a great bunch.  The only time I use my insurance is when I am admitted as the hospital wards are dire, the food is like something out of a dickens novel and the lack of privacy is awful, particularly with this condition – give me the private bedroom and bathroom any day, I am very lucky.

The major downside was that of course I had a newborn baby (and a two year old) that I was only able to spend a maximum of an hour with.  It was so heartbreaking. I had already had to give up breast feeding which is not an easy thing for a mother to do and now I wasn’t even able to cuddle or spend proper time with him – I cried a lot that week.

Fortunately after a week the steroids had kicked in and I was allowed home.  I had come back from the brink of surgery at that point but only for a few weeks.  This was the beginning of a year of hospital admissions and hospital trips but they are whole other stories.

So, this is why I am determined to put these horrible memories aside and have a more pleasantly memorable Easter this year. I’ll let you know what I get up to but you can guarantee that it will involve dancing somewhere.

{March 22, 2007}   Learning lots

Had a fairly good day, although pretty unproductive.  A friend asked me what I did today and it got me thinking.  To be honest recently I haven’t done a great deal on a day to day basis.  I do all the normal Mum stuff but not a lot in addition – other than write this.

Today I had a mesmerising day completing my Tesco shopping order, emailing friends and sleeping.  Hardly the stuff of excitement.  I did spend a while checking out Uk-Jive and Jive Addiction.  I am amazed by what good value freestyle events are – providing you don’t have to travel too far of course.

My aim is to go to a freestyle event once a month or so.  They are great for exposure to different dancers and checking out different styles and attitude.  You learn a lot from them that you can’t necessarily learn in class.  I would love to go every weekend but family time and finances make this impossible. There are a few of us locally who fancy gallivanting around to various freestyles so it should be a laugh.  I have made some great friends in the few weeks I have been dancing – it really is a great way to meet  new people and have fun, I highly recommend it.

I’ve begun to wonder about my communication skills and self esteem this week as a few things have occurred that have made me question them.  I have always rated myself as fairly self assured although clearly having UC gives this a bit of a battering.  Dancing has done loads for boosting my confidence back up, possibly a little too much.  I have become a lot more confident about my body and what it is capable of and clearly better at socialising although after such a long time being pretty reclusive I have clearly lost some of my finer social etiquette skills.  I few things I have said to people have been misinterpreted or more has been read into them than I meant.  I do have a tendency to be quite direct but normally try to be a little less so when in conversation with people I don’t know.  Some recent conversations would show that I definitely need to work on this…

Still, life is a learning curve and man am I learning at the moment.

{March 22, 2007}   Steroids

A few people have asked me recently if I am going to go on steroids (prednisolone) again. The answer is no a massive, huge, resounding NO! I hate them and Dr D and I have come to an agreement that he shall never ask me to go on them again.

I was diagnosed with UC in October 2000 after a year of hellish symptoms.  I was immediately put on a high dose of steroids and then a year of my life was spent living with the crappy side effects which were as unpleasant as the symptoms of UC (the first of many years on these damn drugs).  Without doubt steroids calmed my UC down but it still festered away with no way near 100 per cent relief.

I had horrible body tremors, particularly in my hands.  I dropped things regularly and shook like an old woman and could barely write properly.  The most embarrassing thing was that when like this everyone took it for me being nervous which for my particular job was awful.  I was working in sales and then moved into major gift fundraising for charity.  Day in day out I had to meet people and ask them for money.  Not the easiest thing to do at the best of times, particularly when my job involves asking people for thousands not just pounds.  I’d sit there in some posh hotel or house, unable to refuse the inevitable Earl Grey and then have to deal with a shaking cup and saucer – try explaining that when you are meant to appear ultra confident!

That was just one symptom.  The worst was the pain and stiffness in my joints.  When on steroids I very quickly get to the point where I can’t walk 100 yards without being in agony and therefore end up being housebound.  There is no concrete medical evidence which points to steroids being the cause of this.  The medical explanation is that I suffer Inflammatory Arthritis as an associated condition with UC.  I do not believe this.  I only ever have joint problems when I am on steroids.  Within a couple of months of coming off steroids my joints are fine.  I have recently read a lot of anecdotal evidence which suggests that my experiences are increasingly common for those on long term steroid treatment but as ever more research is needed.

Other yukky symptoms – the moon face and weight gain.  I am normally a size 8 with a petite frame.  When on steroids I bloat to a size 14 within months and my face disappears into this podge of fat – it’s horrendous.  This change is so quick and then lasts for the duration and just flattens my confidence.  It is awful looking in the mirror expecting to see you and finding this person who is not just a lot bigger but looks entirely different too. It is amazing what steroids do for your appetite.  I am ordinarily a healthy eater, I enjoy food and eat well but when on steroids I am constantly ravenous and eat 4 times the amount I normally would.  It is the only insight I have ever had into how obese people with serious food addiction suffer.  It is IMPOSSIBLE to avoid food and when you are that hungry you just have to eat, and eat, and eat, and eat.  The only positive thing according to my husband is that when on steroids he can take me out for a meal and feel we have got our moneys worth as not only do I not leave a thing on my plate but I leave nothing on his too 🙂  You also eat so quickly when on steroids and are never, ever full – it’s like having a bottomless pit. To be honest, I just couldn’t stand the amount of time I was spending eating or thinking about eating.

This massive weight gain (and eventual weight loss) over short periods of time lead to horrendous stretch marks in the most weird places.  I have had two babies and neither have left me with any stretch marks – yet steroids have. Okay, to everyone else they are probably pretty much invisible unless I point them out, but to me they are very obvious and I hate them.

This all makes me seem very vain.  I really am not, well, no more than most, but when your body undergoes such massive changes so quickly it is hard to accept and come to terms with them.

Lack of sleep was another problem. A lot to do with being constantly starving and having painful joints but sleep becomes a thing of the past and sleeping through the night an impossibility – which does nothing for your ability to live a normal life.

Other minor but irritating problems at the times has been in the past when my husband and I have wanted a baby and not been able to get on with it until I was able to come off the steroids – very frustrating.  Then there is pregnancy itself. Inevitably during both of my pregnancies my UC flared up badly and thus I had to go back onto steroids having come off them to get pregnant.  This induced gestational diabetes which made my pregnancy even more difficult – I now have an insight into diabetes and injecting insulin which is no fun for people either.

All in all my entire experience of steroids has been horrendous so after six years of putting myself through the mill on them I finally put a stop to it last year and refused to take them anymore.  Ultimately, the damn things never took my UC symptoms away completely they just prevented it from getting to the point of surgery.

I say all this whilst being fully aware that steroids are one of the miracle drugs of the twentieth century and have saved thousands of peoples lives.  UC sufferers frequently died prior to the development of steroid treatments and modern management methods so we have a lot to thank them for, but my experience and I know that of others certainly doesn’t make them a drug of choice.

So, for those that ask, now you know why I shall never be taking them again.

et cetera