Jiving on Regardless

Life moves in mysterious ways and teaches us many lessons – all the time!! That is what I have learnt in the last few days.  You think that this epiphany would have come to me sooner given recent experiences but no, it took some fairly trivial and some sad stuff for me to realise how precious and exciting life can be.

Last weekend was shit (for once, not in the literal sense!).  I have, for the last nine months or so sat on the local Playgroup Committee as Fundraising Manager.  Despite putting my absolute all into it I found last week that it wasn’t appreciated and after being treated fairly badly (in my opinon) by the Chair of the committee, I resigned.  This kind of broke my heart.  I don’t know if I am just over emotional at the moment but I was devestated and spent far too many days crying about it.  I had put so much into and felt really committed and was shocked to find that I had kinda put too much into it.  I have discovered that sometimes there is just no working with some people. This upsets me as I do my best to work with everyone.  As a fundraiser you can not pick and choose who you work with as the very nature of working with volunteers is that you do the best with what you have got.  I enjoy this, it throws up the odd challenge but it is all part and parcel.  It didn’t help that the difficulties I encountered were with someone I had up until that point considered a friend. I have no idea what happend but after days of angst I have decided to move on and that it was actually for the best.

Whilst in hospital after my first op I made the decision that when well I would commit as much as I could to raising money for the NACC and my local hospital.  Not long after getting back out there I was approached by the Playgroup and as my son goes there I didn’t feel I could say no.  Doing what I did for the playgroup was fun and I loved it but I was never entirely satisfied and felt that I really wanted to be doing fundraising for a cause that had more pull for me.  However, my son is there for one more year so I felt I should do it.  Now I have resigned I realised that my time can now be put exactly where I want it to be and I can now embark on what I really want to and that is to raise lots of money for the NACC and my local Gastro Department.  As ever, what was a difficult situation is actually for the best.

The garage sale plans are going well.  Today I have two local newspapers come out and photograph me and some of my neighbours to promote it and the NACC in local papers.  It is going to be quite embarrassing as who in their right minds wants to talk about bowels in their local newspaper?  However, I feel quite strongly that unless people like me talk about it awareness will never be raised and it is important that people have a better understanding of the illness. Since I have started talking about my experiences locally and on Facebook I have bee astounded how many people have got in touch with me about it.  Often I am the first person thy have met/spoken to that has been through what they have.  This is the definite upside of being so open.  It makes me anxious when I think about talking about it all but it is getting easier.  Obviously I have done it on here for two years but that is different, I know that pretty much the only people reading this are fellow sufferers and it also has a degree of anonimity attached to it.  Exposing ones personal life publicly is not easy.

Anyway, I am discovering that it is good to talk and that it really does help me and others.

My next thing is the half marathon.  We have quite a team gathering for it who are now all registered.  This week I am going to set up a Just Giving page and get my husband to start blogging about it (he likes to blog about his running, which is good) and he and I shall start helping people with their training plans.  I am half considering running it.  I hate running but I am starting to think that it would probably be a good thing to do – i’ll let you know where I get with that train of thought 🙂

Another thing that has reminded me of how precious life is, is my neighbour.  Two years ago we got new neighbours who turned out to be very nice.  They have a daughter who is 18 months older than my oldest son and the two of them hit it off from day one.  She practically lives at my house, being here every evening after school and all weekend.  Over this time she and her family have been a God send to me as she entertains my boys which saves me doing it when I am shattered and her Mum has helped me loads whilst being ill and hospitalised. It is now my turn to help them.  The father has liver failure and this morning I was told it is end stage and therefore terminal although they don’t know exactly how long he has.  I feel devastated for them and their little girl who I have come to love as part of the family. I feel gutted that at some point in the near future my children are going to be exposed to the fact that people’s Mummy’s or Daddy’s do die.  My son has constant nightmares and worries about this subject so to confirm his fears is going to be hard.  We are heading for sad times.  I am just grateful that now I am well I can give back and support them as they have supported us and just be there.

Life can be very hard.

All of this reminds how very lucky I am to now be healthy, very happy and looking towards a bright future.


{March 25, 2009}   Oh so tired…

It’s been a while since I have written, mainly because I have been too tired!  I have just got over a second urine infection (supposedly – I still have my doubts) and am now suffering from extreme tiredness – something I thought I had seen the back of. I am sure it is something easily resolved though, probably anaemia.  I’m going to have blood tests on Tuesday morning (ridiculous that I have to wait a week for them!) which will include Thyroid function, Iron count, and blood sugar levels. Hopefully they will uncover the problem and I can go from there.  I confess it has been getting me down as I really am keen to get back to life now and having lots of good times.

I have also been suffering from minor blockages which are annoying. It seems that something gets stuck, I then get horrendous wind which is very painful and throw up. I am finding that Semeticone tablets really help and walking around.  After a few hours it passes but it is something I could do without and hope eases over time.  I am still concerned about my diet so I have made an appointment to see a dietitian in a few weeks time.

I have been so tired that I couldn’t even make it through an entire WCS lesson with Jordan and Tatiana.  This amazing couple were over from the States and were at my class night, an opportunity not to be missed.  My class night is in London about an hour and ten minutes away from my house.  Usually this isn’t a problem but I was so shattered on Monday that by the time I got down there I had barely enough energy to stand let alone dance.  I managed the first lesson but left before the end of the second lesson. I was gutted as they are such awesome dancers and are so rarely over,  it is not something that will happen again for a while.  Heh ho.

Other than that I haven’t been doing a great deal which is frustrating.  I am moving on with my fundraising and that is going nicely.  My friend has just written a press release for the local paper and has warned me that they may want to interview me – eek!  I am not entirely comfortable with talking about this illness so publicly and locally but as she pointed out, it raises awareness and will help raise the money for my causes.  I am raising funds for the NACC as it is their 30th Anniversary and my local hospital who have recently set up an Infliximab room and need some equipment for it.

Anyway, I guess I ought to go and get my children from the childminder. I have had a more restful day today which has helped.  I have to go out tonight to see a friend in distress so I am saving my energy and hoping I make it past 8pm:-)

{March 11, 2009}   What a day.

Right now I should have my bottom firmly planted on the sofa in front of Home and Away (which is on my PVR – sad but true!) with a cuppa, winding down.  Instead I am dealing with my five year old who had a bad dream at 4.30am this morning, has had us both up since that time and is now kicking up a fuss about going to bed because he’s scared of the dream re-occurring.  In typical hardened Mum, my cuppa is more important than your neuroticisms, fashion I have shouted at him, told him to go to sleep or else and am now trying to give him some comfort by staying upstairs in the study and tapping away on the keyboard so that he knows I am near and can relax – all of this whilst still shouting at him.  I demonstrate ordinary parenting, not the good kind, not the bad kind, just the kind that happens when you’ve been up for 15 hours and feel like a zombie.

Today has not been my finest in an irritating kind of way. Last night I ventured back into the world of vegetables and stir frys – a life without stir fry is not a life after all.  Yep, I regretted it.  Damn cabbage stuff (mixed bag of pre-prepared veg) gave me a re-occurance of my symptoms from last week.  In deed I now know that the GP was talking out of his arse and I did not have a urine infection but just a good old fashioned temporary blockage.  I spent the morning throwing up and feeling full of wind, which is really not a comfortable experience with a pouch.  Eventually after much massage, water and chewing gum it relieved and my pouch emptied for the first time today at 2.30pm – God, the relief. This time wasn’t as bad as last time but bad enough. It is a learning curve this eating with a pouch business but I am getting the gist of it.  It’s not a big deal it just requires some patience and hesitancy around veg and fruit – an alien concept to me.

After this dodgy period I took myself off down to the school to meet with my sons teacher after I missed his parent consultation last week due to illness (oh, the irony of the day).  This was a diversion from what is otherwise my day without the kids.  On Wednesdays they go to the childminders for a couple of hours after school so I get a bit of time to do what I need to and can’t do with them around.  I look forward to Wednesdays as you can imagine, they are my day to just be, to get on and do in silence and to do things at my own pace. Any parent will appreciate that such time is sacred.  So, anyway, because my kids are my number 1 priority I interrupt my day and head on down to the school to meet the teacher at 3pm.  I say hi to my kids and wave them off with the childminder and patiently wait whilst the teacher discharges each of her little angels to their parents.  She looks at me concerned and says ‘i’m sure I sent Brogan out to you have you not got him?” At this point I realise she has forgotten my appointment with her. I remind her and indeed yes she has forgotten and she can’t see me as she has to go and sell books at the after school book stall.  She is the Deputy Head and she forgot an appointment with a parent! I smiled sweetly, exclaimed that this was ‘no problem, yes tomorrow is fine’ and walked off. I head straight to my friend and proclaim “fucking stupid woman (out of earshot of children I have to say), forgot my appointment after I have wasted an hour, a whole hour, of MY day!”. I was not a happy bunny.

As it happens I can’t meet her tomorrow after school as I am meeting my friend R, whom I met after my operation as she had had a Total Colectomy the month before me and we had mutual friends.  I am looking forward to having a catch up so the teacher will have to wait.  My poor son is desperate for me to see her as he gets a treat if his consultation is good 🙂

Not the best day but not the worst by a long shot.  All in all I feel fab, it has its moments but far fewer and far between than having UC.

I am now looking forward to tomorrow when my youngest son and I are going to bake copious amounts of cakes to sell on our Playgroup Red Nose Day stall on Friday. I am going to run the stall and have spent a lot of today putting together costumes for the kids and me – I can’t wait, I like a bit of fundraising fun. The week will definitely get better 🙂

{March 9, 2009}   Best Wishes

Last week started on a low but ended on a high.  On Friday I managed to go out dancing from 8pm-1.30am and had an awesome time, wicked dances and felt fantastic.  My energy, posture, strength and so many nuances in my dancing have improved since I have had my ops.  I am so looking forward to dedicating more time to it and having some private lessons to improve. We cancelled a weekender we were meant to be doing this week as I don’t quite have the energy to dance all weekend (for anyone who has never been to a dance weekend when I say all weekend I mean it, we normally manage a couple of hours sleep a day!).  Instead we have booked for the UK West Coast Swing Championships in which a lot of our friends are competing so it should be excellent.  All in all I feel much better and much more positive.

On a lower note I have been sad to hear that Martin from Number Twos went down hill with his UC and now has a colostomy.  I wish him all the best of luck but am sure that he is now moving on to a much better life – Good Luck Martin!

I also want to wish Marianne the best of look.  She often comments on my blog and she is today having her J Pouch surgery, I hope it goes well.

Right, I had better go and finish dinner, have a long winded Playgroup Committee meeting tonight – boring! The thing with being well is that I am now getting collared to do all sorts of dull stuff 🙂

{March 4, 2009}   Cusp of Change

I feel a bit lost and a bit teary today. I think it’s because I am waiting for this all encompassing change to happen now that I no longer have UC and because I am still struggling to regain full health after my reversal it is not happening and I wonder if it is just a naive thought to believe it will happen.  This urine infection has knocked the stuffing out of me. I feel so exhausted and I know it is not surprising when my body is still recovering from surgery but it is still incredibly frustrating.  I just desperately want to get to that point when I can look at my life and think ‘I have been well all day today and it’s likely that I will be well all day tomorrow and all day the next day’.

I have just had to cancel a dance weekend which we were due to attend next weekend as I am just not going to have the energy to deal with it.  This is really upsetting as I have been looking forward to it for months and although it was an ambitious plan six weeks after reversal I really had my heart set on being well enough to manage and I would have been had these damn infections not got me one after another – grrrr…. I really want to have the kind of life where I can book things with the confidence that other people have.  We have booked our trip to Las Vegas and now I am really wondering will I be well enough?  The logical part of my brains says ‘relax, it’s four months away of course you will be well enough’  but the part of my brain that has been living with illness for ten years says ‘surely you won’t be that lucky’.

I keep telling myself that I really am on the cusp of change, that I really am going to be well, completely well very, very soon and I just need to be patient, but this is the same thing I have been telling myself for years and I am soo tired of it.

I want to be healthy, fit, energetic and happy.  I know it is coming, I had a glimpse of it whilst I had the bag but I want it properly, fully and now, right now.  Please let it come soon, really soon.

{March 1, 2009}   More Anti-biotics!

This weekend hasn’t been too good.  It started off okay apart from my tiredness which had been growing over the week.  Saturday morning I woke up and wanted to go out for the day with my family so we packed a picnic and headed off to a place an hour away.  We got there and realised that it doesn’t open until next weekend – great! Having promised the kids a day out we had to find somewhere to go so we headed back home to a place near us  – an hour back.  All morning I had been feeling dodgy. We had a lovely day at a children’s farm but I felt increasingly ill with what I thought was bad wind – I had stupidly tried to eat baked beans on Friday night.  This feeling got worse and my stomach got more painful and by the end of the evening I couldn’t keep anything down and was throwing up.

By this morning I couldn’t even keep water down and worried about dehydration I called the out of hours doctor.  They asked me to go to the out of hours clinic at the hospital, a place I really hoped I had seen the back of.  It turns out that I have a urine infection which explains all of my symptoms.  I am now on anti-biotics and have been told not to eat for 24 hours.  I am starving so I just tried a biscuit and paid the price so shall stick to the 24 hours now!

All in all not a good weekend.  This is my third lot of anti-biotics in the four weeks since my op.  They say things come in threes so I really hope this is it now and I can truly concentrate on getting well.  It’s not a big deal, many people go through far worse things post op but it is enough to set me on a bit of a downer which I can’t afford right now.  As my surgeon told me – upstairs is where it’s all at so it’s important not to stress and to stay positive.

It doesn’t help that in my search for answers as to why I might be feeling this way I went on the IA website. This is a fantastic support group but I personally find that all the stories on there scare the shit out of me (scuse pun!) and I always come away feeling relieved that my experiences aren’t as bad as theirs and depressed that the future holds all of these different possibilities that aren’t too good.  Please don’t get me wrong, they are great people on there doing a wonderful job, I just can’t cope with the enlightenment at the moment 🙂

All in all I am not feeling on top of the world but I am DETERMINED to get well by next Friday when I intend to dance my heart out in preparation for the intensive dance weekend we are booked on the weekend after.  I shall be fit enough to cope with it, I shall!

et cetera