Jiving on Regardless

{October 22, 2008}   Up and down

I can’t believe it has been three weeks since my last blog – time just seems to fly at the moment, with too much to do and too little energy to do it with!

Where am I now?  Well, last week was a major blip.  I had my period and am convinced that this threw my body into turmoil once again.  I had barely any sleep for a week and ended up back on all of the strong painkillers – I really thought things had gone backwards five weeks.  Fortunately, with some help from friends and family and a lot of rest, things are now back on track and weirdly, for the first time, I have had no painkillers whatsoever for three days.  It is definitely a case of one step forward, three steps back, four steps forward – it’s a flipping roller coaster this recovery business.  One thing I have learnt though is that no matter how much you want it your body can not just recover from such an op and bounce back in four/five months.  I reckon it is going to a take a good while longer for me to feel truly well again but every week (apart from last) does see an improvement.  I think also that my recovery is hampered by being a Mum to two young children.  I know a few people who had ops around the same time as me and who generally seem to be doing much better, I am sure it is because they have office jobs and are not running around like loonies all day – it’s ironic but I actually I think I would be much better off if I worked again!

Talking of working again I am, kind of.  I have become the Chair of the Fundraising Committee at my sons Playschool (I may have already mentioned this). It has become a much bigger role than I had first envisaged, hence the reason I haven’t been blogging. I am spending a good 12 plus hours a week working on it.  It is fantastic thought, it keeps me sat in one place for starters which helps me rest and my brain is loving re-engaging itself and rediscovering its functionality 🙂 It is great to be doing something normal and worthwhile too – it’s definitely helping by stopping me from moping about my crap physical conditioning – I am so unfit!

My lack of fitness is really annoying me now.  I have never been one to have much patience and I don’t change.  I so want to be able to dance and be busy, busy, busy, the way I was on my good days with UC and the way I envisaged being after this op.  Everyone keeps telling me it will come but it can’t come soon enough.  This evening I am going to have a go at my new Pilates DVD and get my muscles stretched and functioning again.  I have been dancing a couple of times but after two dances my heart feels as though it’s going to bounce out of my chest.

Tomorrow I am seeing my consultant for the first time in six weeks.  I am DREADING it.  The thought of him examining my pouch is making me feel physically sick and more than a little stressed.  Last time he had to poke around in there and it was excruciating and after last week I know that the state of things is not that much improved.  I am hoping to have the courage to refuse an examination and tell him he’ll have to sedate me before he goes anywhere near my backside, however, I am gutless and shall probably just get on with it and have a good scream – i’m dreading it.  Fortunately I am more pain free this week than I have been since the op so maybe it won’t be so bad……maybe.

I am definitely not going to have my takedown just yet.  I want to have lived a normal, pain free life for at least a month before they activate the pouch.  To be honest I don’t have much confidence in the whole procedure going well and I am so frightened of pain now that I can’t really bare the thought of another operation, however minor it is supposed to be.  I know that I will have it as if I don’t it will render everything I have been through in recent months pointless, as all of my pain and difficulties have been pouch related.  The damn thing is there now so it definitely needs to be trialed but I am not sure how tolerant I will be with any teething problems which is another reason why I ought to wait.  Right now i could see myself having it, having some minor pain and getting in a tiz and getting them to reverse it quickly without giving it enough of a chance.

Okay, i’m waffling, probably best to leave it there – raffle tickets to order for a school fair!


{October 2, 2008}   It’s really gone!

It’s not quite over but this week has been a week of firsts since my op:

  • The first week I have had a normal week taking care of our boys (with no extra help from family or friends), the house and N as I usually do
  • The first time we have had sex (this is not something I would usually declare to the world but I promised I would always write about this stuff openly – sex is important and it is a difficult part of a healthy relationship to maintain when you are ill)
  • The first time we have been dancing
  • The first time I have drank alcohol

All of these firsts bar the last have been amazing (I had one large glass of wine and ended up feeling very sick – alcohol is not for me, even more so now I am more likely to dehydrate) .  The one thing I have noticed with all of them is the freedom! I had no idea quite how much my Ulcerative Colitis consumed my body and my mind.  For the first time I don’t have to worry about my body letting me down in some humiliating way.  I hadn’t realised how much this had effected our sex lives but suddenly I am now able to be completely relaxed.  I am not tired, my body doesn’t feel like it is functioning on zero energy, I am not worried about smells (ironically, I worried about this more with UC than I ever have with my bag), most of all I am not worried that half way through any activity I will suddenly get that feeling which means I have to run off to the loo – and stay there for ages – in pain.

I no longer feel anxious about chating to people or being in social situations which are unexpected or unpredictable.  I don’t have to worry about where toilets are all the time.  I walk around town shopping with the kind of freedom I haven’t experienced in years – toilets are no longer the first thing on my mind.

I no longer have to go to the hospital every bloody week or have blood tests!

This week has really opened my eyes to how much my life was blighted by UC and how much brighter it will now be without it. Suddenly N and I can plan things with confidence, we know I will have the energy and the health to do whatever it is we have planned. I am also no longer worried about the possibility of my pouch not being good.  I know that I can do everything I want with a bag and that everything is 100 times better with a bag than it ever was with UC.

I love not having UC! I am very excited about what my life holds now.

{October 1, 2008}   Christmas – or not.

I’m going to have a little rant today…

It’s that time of year when people’s thoughts turn to Christmas.  Some might say it is premature but when you have children you need a good run up to be organised and get everything done in time therefore inevitably that cup of tea with a friend brings up the topic of Christmas in some respect or another.

In recent weeks I have had a number of friends proclaim ‘we are not doing Christmas this year so don’t get our kids anything”.  I think this is SOOOO awful.  We are all aware of the financial crises faced by many at the moment and even the more secure amongst us are feeling the pinch and having to change the way we do things and be more conservative with money.  To my mind this is not a bad thing as Western society has become uncomfortably materialistic and I think it would be doing the world a favour to bring back more frugal and sensible values, particularly where children are concerned (do children seriously need half a department store of toys in their bedroom??).  This is where the ‘not doing Christmas’ statement annoys me.

Firstly I don’t give to receive.  I wouldn’t dream of giving someone a present and then expecting one back. I give presents to the people I care about and normally they care about us too so it is a mutually lovely thing.  Secondly, I have never given in to the whole ‘bigger is better’ thing when it comes to gifts.  I have always stuck to an infelxible budget with everyone and just spent more time searching out the right present within my budget or – dare I say it, making something. I know so many people who spend x amount on someone because they believe that person to spend x amount on them – that’s so shallow.  Invariably people think I have spent more than I do but that is because I just put a little bit of time into it and sniff out bargains or something which is personal so the price is irrelevant.

My biggest bug bear with this though is that you don’t have to spend any money on a gift if you are thoughtful enough.  Christmas is about sharing and spending time with family and friends and doing nice things for one another (I know the religious amongst us would wax lyrical about other elements of Christmas but I won’t here).  I feel really strongly that if you care about people you make an effort for them and, especially with kids, this effort is fun and not at all hard.  Rather than buy expensive presents for people I have always made things for them.  The kids and I make a lot of Christmas decorations, hand print dough, cards, things like hand painted coasters etc etc.  I also bake a lot and make things like truffles or nice biscuits.  I also make an effort with wrapping gifts to make them look special rather than just thrown in paper.  Yes this stuff is time consuming but it is actually fun, incredibly satisfying and people are so amazed when they realise you have spent time thinking about them, it also slows you down and makes you think about and enjoy Christmas rather than being thrown into chaotic stress.  All of this costs next to nothing shows a person that you care enough about them to not only give them something but spend time making it especially for them – you didn’t just walk around a shop and pick up the best bit of tat you could afford.

I think if people did more traditional things they would feel less pressure to spend money they can’t afford and would enjoy Christmas.  It is not hard.

So, people may not be ‘doing Christmas’ but I am.  I shan’t give bought gifts to those who have asked me not to as I would hate to make someone feel uncomfortable or feel that they have to return the gift.  Instead I shall bake a cake or a batch of biscuits or make a nice card as I care about them and I want to be able to express that at Christmas.  I will, as usually, probably buy very few shop gifts.  Even for my kids and husband I always make something or do something which costs next to nothing.

I probably sound self righteous but I don’t care.  I believe very strongly that if people concentrated on what really matters and made a return to all things simple we would all be a lot happier.  I think a lot can be learned by looking at how things were done in the 1940’s/50’s before people developed such high expectations of everything and everyone.

Rant over.

Blimey, when did I become so Conservative 🙂

et cetera