Jiving on Regardless

{July 27, 2007}   Flexi Sig

Yesterday I went to the hospital for, I think, my twelth flexi sig although it could be more, I can’t remember.  I felt more anxious about it yesterday than I ever have done before but I think it is because last time was pretty horrible as I had a bad cold and temperature which made the entire experience very uncomfortable.

I talked myself into calming down and my Mum took me to the hospital.  When we arrived there were no beds as some of the morning patients were still hanging around.  This was at 2pm so it was going to be a long afternoon! It was annoying but it had never happened before as they normally run like clock work.  I am lucky to have a brand new procedure unit at our hospital which is lovely.  There are lots of little rooms with beds in and you are each allocated your own room for the duration of your day stay.  We share bathrooms but there are lots to go around and these are nice, clean little rooms too, not the grotty cubicle you normally get.

After waiting for an hour they took me to my cubicle and promptly got me to change into my gown and then administered the enema. They used to give me Kleanprep which is a truly disgusting substance you have to take with three litres of water over the course of 12 hours.  It tastes and smells revolting and makes you want to throw up every time you drink some.  I quickly refused to take that for my procedures as it made the whole process horrendous so they then started to give me picolax which is equally revolting but you only have two glasses full over 12 hours and the rest of the time you can drink plain water.  Since switching from Colonoscopies to Flexible Sigmoidoscopies, due to my colitis being lower in my bowel and rectum, they now just give me an enema an hour before the procedure which is much better.  With the other laxative preparations you are also not allowed to eat for 24-12 hours whereas I can eat normally up until the procedure now.

Stupidly the nurse forgot to do my observations (blood pressure, pulse and temperature) prior to giving me the enema so tried to do it afterwards.  Firstly the battery died on the machine so I then gave her 30 seconds to do it before I had to go.  I think she felt a bit silly, you simply can’t keep a patient with you for long once you have given them an enema!

It was then into the toilet for over 30 minutes.  My bowel empies quickly on that stuff, baring in mind I had already been to the loo about 6 times that day.  I was stuck in there so long because it was flippin agony.  It is not normally so painful which suggests that my UC is quite bad again.  At one point I was looking at the toilet floor thinking can I curl up down there?  I decided not to as the last thing I need is MRSA! I just couldn’t make it back to my bed though.  I finally took some deep breaths and headed back where they were waiting for me to take me down.

I was in so much pain it was utter relief when they injected the sedative.  My Mum was telling me that it is Valium they use to knock you out. No wonder it is so addictive, it is so nice to just float away, I love it.  I go out almost imediately and then can’t remember anything until they get me back to my room.  I know my consultant said something to me about the procedure but I have absolutely no idea what.  I think they said that they want to see me a week on Wednesday at clinic but I can’t be sure.  I may have told them I was on holiday next week but I can’t believe I was that coherent and with it. 

I always get up and out of bed the minute my eyes open much to the amusement and shock of the nurses.  I drunkenly get myself dressed and meander (literally) down the corridor to the discharge lounge where this time my Mum was waiting for me. They insist on giving you a cup of tea and a biscuit which Mum informs me was amusing to watch as I tried to dunk it in my tea (I know – yuk!), kept missing and then dropped it in entirely 🙂 My Mum then held me up whilst I drunkenly made it out of the hospital at 5pm and she drove me home.

When I got home I immediately went upstairs to bed after saying hi to the kids and slept like a log until 7pm when my husband got home. All in all a succesful procedure and a lovely drunken experience on Valium – I love it.

People wonder why I never worry about having the procedure which ultimately isn’t that pleasant. It is because I am blissfully unaware of everything and am merely loving the sedative – I highly recommend it (scuse pun!)

Off on holiday now so shan’t be blogging for a while.  Please, please let the weather improve.


{July 25, 2007}   Birthdays and Holidays

The last week has been incredibly busy and there seems to be no let up this week either, although it is all with lovely good stuff so I am not complaining.

Last week was taken up with birthday celebrations and leaving preschool stuff for our four year old.  Gone are the days when your birthday is just one day, B had something special going on everyday last week, so much so I am not sure he entirely took in the day it was actually his birthday. On that day we took the boys to Hamleys to buy toys and we had a lovely day hopping on and off buses around London.

I LOVE  London.  We lived there for three years until B was six months old and then had to move out ’cause our flat was only one bedroomed and to upgrade would have cost the earth (we now live in a four bedroom house for the same money – says it all huh?!).  Going down last week for the first time in ages made me realise just how much I miss it.  I haven’t been down much in the last couple of years cause of pregnancy and illness but last week my heart literally ached with the need to be down there again.  We can’t afford to live down there but we shall definitely be visiting more often from now on. We only live a forty minute commute away and my husband works down there so it is not difficult to do.  I feel alive when in London and as though I am part of the world.  I love the hustle and bustle of it, the fashions, the different languages you hear, the various races of people, the various types of people and the energy which oozes from every part of it.  It is hectic, dirty and far too busy but I love all of that too.  Our cozy little market town just aint the same!

Other than birthday celebrations we haven’t done much.  I have been dancing a couple of times and am really back into although my Sunday night venue has become a bit dull.  I think it is just the time of year but also the music is getting really repetitive which I have realised really makes a difference to how enthused I am to dance.  Tuesday night was excellent as ever with some great music but far too many people.  I feel like my dancing has suddenly started to improve a level again and it feels great. I have been obsessively practising spinning which is still really difficult but I am determined and already my regular dancers are commenting on the improvement. I am also learning the lead which is enlightening and fun.  I have no problem learning the moves I just can’t remember them during freestyle, I guess that will come in time. I had a fantastic night last night but only because there are four/five dancers who I dance with loads and they teach me lots whilst having a great time.  I just wish I could get them to convert from Ceroc to my other class as that would be brilliant.

Off on holiday on Friday so I shall be awol from my blog for a week or so.  I am seriously lacking in time to do everything I need to before hand but I can’t be bothered to stress over it so I am just pottering through my various dull tasks and getting there slowly.  We are off for a week in Staffordshire and I am so looking forward to it, we shall be dancing in new places, having lots of family outings including the obligatory Alton Towers and generally chilling out which we seriously need.  All in all a much looked forward to holiday.

Before all of that I have my sigmoidoscopy tomorrow but I shall tell you all about that next time.

Anyway, things to do…….

{July 16, 2007}  

I’d call my UC symptoms today ‘simmering’ as is my mood.  Normally my Monday mornings are blissfully peaceful.  I take my son to preschool for an extended time because of lunch club until 1pm, and my youngest’s sleeps from the minute I get back home at 9.30am until I have to wake him up to fetch his brother.  This would have been perfect today as I am exhausted after the weekend and really needed a good kip. However, throw something new into the mix and it just doesn’t happen. I am so selfish as this is all my own fault. In order for my nanny (who incidentally I am lucky to have!) to have my sons birthday off on Wednesday as we are going to London for the day and she is a Jehovah’s Witness so doesn’t celebrate, we decided to swap her day for today instead. She has clattered about making more noise than I thought it possible for a human to make and has annoyingly disturbed both me and my little one so neither of us got the sleep we were expecting.  Now I am unreasonably narked! 😦

I have had enough of having a nanny as the whole thing annoys me. It annoys me that whilst I ferret around cleaning my house she gets to play with my kids and have fun, it annoys me that she disrupts my routines (which I like!) and she ‘helpfully’ does my washing and ruins all of my underwear. All in all the negatives are outweighing the benefits right now as I am fed up of accommodating someone else in my day to day life.  It was great when I was badly ill as I didn’t care and I was just in bed being a useless waste of space but now I am more active it is hard and I hate it.  I am meeting a childminder at some point this week and hope to change my childcare arrangements as of September when I shall also hopefully have a job!

I am tired and it is making me mardy, however I had a great weekend, the source of my exhaustion.  Friday night I went to a great freestyle which boosted my previously flagging confidence.  Saturday was a lovely family day followed by a DVD with N and then Sunday was my sons Pirate and Princesses party.  We all dressed up as pirates, the weather held and we had a fab day running around and playing party games.  I then went dancing again last night which tipped my energy over the edge but it was nice.  All in all a lovely weekend and worth the price of tiredness.

This week is going to be a busy one so I doubt I shall be on here much.  Tomorrow my son and I are on a preschool trip to Gullivers Kingdom (love it there) and on Wednesday we are taking him to Hamleys to pick a toy and lunch in London for his birthday, I really can’t wait to do that, he will be so excited, mainly to go on a train! On Friday it is his last day at Preschool and then my baby departs his babyhood completely and heads up for ‘big school’ 😦  🙂

Talking of whom, I really ought to fetch my little man.

{July 13, 2007}   Today

My UC has been flippin’ agony today, typical on a day when I am planning on going dancing tonight and really looking forward to it.

It started this morning at 6.30am and at 8.15 I was still in a lot of pain talking to myself to try and get myself dressed and my little boy to preschool on time. It went a bit like this “deep breath, you can do it, just get up and shower and it will settle down”, ten minutes later, still lying on the bed having not given the kids breakfast or managed to get dressed this sentence was repeated for the twentieth time. There’s nothing like a bit of self affirmation to gee a person on in the morning!  I did, surprisingly, manage to get up and and out the house on time with both kids in toe and prepared to head off immediately to the doctors after dropping B off, to have my bi-weekly blood tests.

The nurse who does the test probably tests about 20 people a day.  She does my tests every other week and has done for eight months now. You would think she would be good at it and it wouldn’t hurt but every sodding time she jabs the needle into me like she is trying to pop a balloon, and it hurts like hell.  The phlebotomists at the hospital NEVER hurt, I wouldn’t know they had taken blood if I didn’t watch. I now have my bi-weekly bruised arm, again on a night when I am dancing and it will hurt 😦

This afternoon has been lovely as both of my kids fell asleep for two hours and are now vegetating in front of the TV and a new DVD I got them this morning – my parenting skills are to revered! However, I am now suffering my punishment as I have just spent 25 minutes in the bathroom and once again I am wondering why I haven’t yet allowed them to remove my rectum ’cause quite frankly I could do without it right now!

So, that’s my day.  To make myself feel better I indulged in a new dress which I shall wear tonight.  On heading into town this morning to get stuff for my four years olds birthday party on Sunday I couldn’t help but notice that the sales were on and I couldn’t help but go in and have a look and I couldn’t help but buy myself a dress.  It is a compulsion, an affliction my husband would love me to rid myself of and one, I am sure, from which many women suffer. It hurts but one just has to go with it 🙂

Hopefully tonight will see an improvement in my day and the weather will behave itself and allow us to have a nice weekend, especially for the party on Sunday.

I guess I better go and be a proper Mummy…

{July 11, 2007}   Another Flexi Sig (sigh!)

I can’t believe it has been a week since I last wrote anything, I have been a bit slack recently.  This is mainly because I am currently engrossed in writing my CV and covering letters.  Just finished my main one today whch is a relief so after my husband has edited it – always a good idea to have someone else check it – I shall send it tomorrow.  Fingers crossed I will get an interview as this is for the local fundraising position I would really like.  It scares me loads to be going back to fundraising and a position of such responsibility (Director of Fundraising) but I know I can do it really and just need to keep pushing myself along until I get into it all again. It is already frightening using my brain again.  I haven’t discussed strategies and budgets for years!

The hospital called today and confirmed that I have ANOTHER Flexi sig a week on Thursday.  I have honestly lost count of how many of these I have had now.  I so wish that this illness didn’t involve so much poking around up there. Talking of which, I had a random thought yesterday about how much worse this disease could effect my life.  I could be a gay man  – how pants must that be? I could go on but given my lack of experience in these matters I won’t 🙂

I am yet to hear about the Infliximab Infusion.  The consultant wanted to do it all at the same time but the girl who called today didn’t mention it and I didn’t think to ask so who knows.  I suspect they will check me out first and then arrange the infusion.  Weirdly my UC hasn’t felt as bad the last few days but then it always fluctuates like this.  It would seem that every time I tell my consultant it is back it then decides to calm down – I have a feeling there is some psychological involvement however I am doing enough psycho analysis in other areas of my life without going into this just yet.

Things are ticking along okay at the moment.  My husband and I are sorting our problems out and really coming through them which is a great relief.  We have some way to go but at least we are getting there.  It was touch and go for a while but we are a tough couple and after ten years together feel it is well worth making an extra special effort to keep going.

My oldest is going into his last week at preschool next week  (sob!) . This week I had an emotional meeting with his keyworker who clearly adores him.  She told me some bits about his work and comments at school which made me and her cry.  My little man is the sweetest little thing you’ll ever meet.  He has this uncanny ability to make people feel really good about themselves and shows his empathy for people in a scarily mature way.  His keyworker has recently been ill and on returning to work he said “I have missed you loads T.  Can I give you a kiss to make you feel better?” he also made T’s day by commenting that she looks like Groovy Chick (she is in her 40’s but has for the last year been wearing pink Crocs and dresses quite wackily, strangely she reminds me of Groovy Chick too).  This has made her year and she now has Groovy Chick lunchboxes, pens and all sorts.  I believe my boy has made a lasting impression 🙂

I went dancing last night and enjoyed it more than I have done in weeks.  I started to learn the lead which is hilarious but I made a good start so shall now do the beginners class as the lead.  I then had an excellent intermediate class with my fixed partner (this class has about 150 people in it so I can’t face going up and down the rows). My partner this week (I swap two partners with another girl – sounds good huh?!) really boosted my confidence and got me double spinning! It feels great, needs some practise but I am getting there.  My lack of spinning ability at a level I want to be was frustrating me enormously and denting my confidence. However, my motivation is back so my lounge floor is going to see a lot of action now whilst I practise 🙂

Right I am off to indulge more prescious time on Facebook – that  site is horrendously addictive!

{July 4, 2007}   Consultant Appointment

Today I saw my consultant for the first time in 10 weeks.  I was meant to go four weeks ago but couldn’t make the appointment and so it got put back until now.  He was disappointed to hear that my symptoms have been worsening and he suggested that we do the Infliximab infusion to see if we can get it to settle.  They are getting in touch with me later this week to arrange for the pre treatment chest X-Ray and blood tests and I should then have the treatment in a couple of weeks.  I am not too concerned about it.  I shall just do it and hope that it helps as I would hate for things to get much worse, especially when I am trying to go back to work.

I went dancing last night and felt so exhausted after a while that I left an hour early.  This is a sure sign that things aren’t right for me as I hate leaving early, I was enjoying it too, good tunes, great dancers but unfortunately my body couldn’t hack it, spinning on the spot was just hopeless so I figured it was time to call it a day.  Hopefully things will improve soon.

Otherwise I have been busy applying for jobs, in fundraising and organising my sons fourth birthday party.  We decided to go for it although it is nothing fancy, we are merely having a family and friends picnic at a local beauty spot and the kids are going to dress as Pirates and Princesses (my son loves dressing as a pirate) and I shall lay on some traditional party games.  It is going to be fairly low key but with my family in attendance it is normally fun as there are so many of us.

I am just in the process of tidying up my CV and writing a covering letter so I had better get it finished. Time to go….

{July 1, 2007}   Kids and A&E

I really should be heading into bed but P Diddy singing Missing You at the Concert for Diana has made me all melancholy so I thought I would write instead.  That song makes me go all tingly and emotional, I love it but it doesn’t half make me sad.

Today has been one of those days.  This morning at 9am my little man, W, who is eighteen months old spilt a hot cup of tea over him which his Dad had left out not realising what a long reach he has and that he was able to get to it.  It was one of those stupid mistakes that you imagine other people would make. It was awful. I was literally just getting out of the shower when I hear this blood curdling scream in my bedroom which I knew meant he was very hurt but I just couldn’t imagine what could have happened.  I ran out to him but my husband got to him first and lifted him into the bathroom.  Fortunately we had done a first aid course when my oldest was born so I kept quite a cool head and just put him in the shower to cool him down and then wrapped him in a wet blanket whilst telling my husband to call an ambulance. Fortunately it was all far more dramatic than it actually was as our quick action stopped him from being badly scalded and although we were taken to hospital in the ambulance after looking over him they didn’t even need to dress the burn. He has a large mark on his tummy but they say it will go with no scaring which is good.

It’s wierd what you do when in shock though.  There I am starkers dealing with bub as, as I had mentioned, I was just getting out of the shower and I realised that I couldn’t greet the ambulance men that way so I had to get dried and dressed.  I handed W over to his Daddy and proceded to get dressed and the only thing I could think was I must put deoderant on – very odd! 🙂

Sometimes being a parent is so, so scary.  When my oldest was 9 months old we had to take him to A&E as he was screaming in agony. He hadn’t been well for months but no amount of trips to the doctors could convince them anything was wrong.  Anyway, finally he was so, so ill and in so much pain that we took him to A&E.  They put it down to a stomach bug as he had diarhoea and was vomiting a lot by the time we got there.  I knew this wasn’t the case as his symptoms had escalated over months and he wasn’t putting on weight but not being a doctor I couldn’t prove otherwise.  After 24 hours we were discharged and I took a poorly baby home. I knew he wasn’t right but he had improved so we hoped for the best.  A few days later he was screaming in agony again and this time we took him to A&E and refused to leave the hospital until he had been fully examined and we had determined the problem.  I was especially worried as his symptoms were similar to UC.

Anyway, after lots of tests, they finally stuck a finger up his bottom and discovered that he had been born with a partially closed anus.  This meant that he couldn’t poo properly so was severely constipated which caused him pain and that when he did have to open his bowels it was shear agony as he couldn’t push it all out.  My poor babe.  Anyway, he eventually had a minor procedure to stretch his anus and I then spent the next 18 months poking a stick up his bottom to keep the scar tissue stretched (grim) and he lived on laxative medication and hig calorie milk for a few years (he never has really got the hang of eating as a consequence which is a nightmare now).  At the time it was awful as I would be in agony on the loo with my UC not knowing what to do with myself for the pain but having to sit there with my baby on my knee who was also crying in agony from his bowel problems.  I kid you not, this was a daily experience for B and me, both of us on the toilet crying together.  It would be funny if it hadn’t actually been so bloody awful. Most UC patients bring their kids up in the toilet, there is no other way round it but I had to bring mine up actually on the damn thing! No wonder the poor child is so clingy today at the age of 4.  Bowels huh? They are never simple things.

Fortunately W, my youngest has never suffered such problems but I have this feeling that this mornings trip to A&E is not my last.  I just know that he is the kind of child who will break various limbs from climbing on or up things, will be the kid that tries to be Superman and jumps off some kind of high platform, he will be the one that gets badly injured playing football or some such or will fall of the tree he is climbing. He is just a typically fearless little boy who is going to give me a string of anxious moments I am sure.  B on the other hand is the most cautious child going which I am sure is due to his early years of being so poorly (although he had the procedure at the age of nine months he was still poorly with it for a good eighteen months afterwards.  He spent more time sitting on my knee being cuddled than he did being active and he is a tiny little thing to this day so could never be quite as adventurous as my giant of a little man W.).

Anyway, I guess parenting and A&E go hand in hand as I am not sure I know any parent who hasn’t been there for one thing or another.  In fact, in the last week two of my friends have ended up there with their kids, there must be something in the air.

It’s funny how much better you feel when you write stuff down. Both events I have waffled on about have been incredibly stressful for me.  It has to be said that my oldests’ problem were far more difficult than our minor episode this morning but still, loving your kids and wanting to protect them is the most intense feeling a person can ever experience and when this is knocked it is powerfully distressing.  I would rather go through a severe flare up of UC than see something like what happened this morning happen to one of my kids again.

Time for bed…

et cetera