The ironies of life definitely make me smile.  This morning my friend called to ask if I could take her little girl to school because her nine year old has diarrhoea and she doesn’t want to leave the house for fear of her needing the toilet.  At the time I had already missed her first call as I was stuck on the loo and when she did get hold of me I was just heading off for my third trip to the bathroom this morning! At 8.30 am when I was supposed to be collecting her daughter I sat on the loo wondering if I would be able to get my own children to school let alone someone elses.  I did manage it as ever but it took some positive affirmation to convince myself that I could make it to school okay.

I say this is ironic but actually it is probably self induced.  I tend to get on with things apparently well, so much so that people don’t think of me as being ill.  I like this to a point but it gets a bit much when I am asked to do this, that and the other especially as my natural disposition is to do anything I can to help people.  Last week I spent one morning cleaning my neighbours house as her stuff was loaded into vans fo her house move.  This neighbour had a heart attack the week before her move so couldn’t do it and I was roped in/semi volunteered to help.  That afternoon I was completely exhausted and feeling rough – very silly, as my husband pointed out, I barely have the energy to clean my own house let alone someone elses

I am getting to the point where I am going to have to start saying no and asking for some support back, the trouble is I am not very good at it – I like being self sufficient.

On a different subject entirely I did have a good weekend.  The kids went to my Mums for the weekend so Friday night I headed to bed very early, had a good nights sleep and managed to get myself to my dance workshop and evening freestyle. Luckily I had a really good day with my colitis (I tend to have good days every now and again out of the blue).  I ate really good energy food and drank gallons of lucozade and sat out a few dances.  I was really chuffed as I hadn’t danced West Coast for nearly four weeks and my lack of activity dance wise was getting me down.

I shouldn’t think I shall be doing much more dancing now before my op.  I may go to a couple of classes but that will be it.  I am going to miss it but it will be there when I get better.

I have been really, really teary the last few days and feeling quite cloudy.  I don’t really know why I can only assume that it is something to do with the op and impending change.  N and I had a flippant conversation about dieing on the operating table.  I know this is HIGHLY unlikely but I confess it has crossed my mind and I don’t know if it is something I ought to give more thought to.  I would hate for that to happen and my kids be left with nothing from me.  I was also thinking that now might be the best time to write the will N and I have procrastinated over for years now.  It all feels a bit too morbid and defacing to think about but at the same time maybe it is sensible to give it a little bit of thought?  I don’t know, it’s difficult.

On that downer I shall go and try and raise my spirits with a brew.

The last few days I have felt a bit flat. I think it is because I have been in the house a lot on my own, feeling tired and generally not too well and it is driving me a bit stir crazy. There is only so much cleaning one person can do! It is not helping that I still haven’t heard a date for my surgery. I have a feeling that my surgeon’s secretary only deals with his private business on Fridays!

The health service in this country is incredibly frustrating. As I have mentioned before, we are lucky enough to have private health care through my husbands work. They basically pay an insurance company to cover their employees and their families. This is particularly great for us as a) we have had sooooooo much use out of it over the last ten years and b)I wouldn’t be able to get private insurance due to my pre-existing condition. All employee schemes take on any risk, so even when N has changed jobs I have still been covered. The thing is, having private health care doesn’t make that much difference. I would say that the only significant difference is that when having a non urgent operation you don’t have to wait for the NHS waiting lists which take 6 months plus, you can just get on and deal with the problem.

There are a lot of people from the US reading this so I shall try to explain our health system as simply as I can. Firstly, when you have a symptom of anything your first port of call is your GP (General Practitioner). They are doctors with a broad based knowledge of everything and no specialisms. Your GP ascertains if and who you would need to see next and refers you to a specialist consultant. If doing this through the NHS you then have to wait x amount of time for your initial consultation with the consultant. Once you have had your initial consultation your consultant would either have treated you and therefore care is over or he would refer you for further out patient or in patient appointments/surgery.

In the case of Ulcerative Colitis you are referred to your consultant who then has you on his list and you are given regular out patient appointments, their frequency depending on the state of your UC. For example I have usually seen mine once every month or more. If you are in remission the visits decrease to six monthly or annually or you are given an ‘SOS’ which is basically authority to go direct to your consultant, bypassing your GP, once your symptoms flare up (I have never had one and always looked at people walking out of the consultants room with one with envy).

Private health care kicks in at the point of GP referral. Once you have your referral letter you can make an appointment with a consultant at a private hospital. All consultants pretty much work NHS and Private. Your insurance means you get to have an initial consultation much quicker than on the NHS and you also get to have any follow up treatment much quicker i.e surgery. I would probably have to have waited at least six months for my surgery (unless admitted as an emergency in the interim) on the NHS. You are allowed one follow up appointment after surgery on your private health care and then you revert back to NHS for follow on out patient care. As the same consultants and surgeons work both NHS and privately this transition is smooth and easy.

I have found in the past, that due to the excellent care you get on the NHS when you have UC it has often been quicker to use the NHS rather than our insurance as with insurance you still have to wait a few weeks for a clinic slot to come up. The consultant tend to work one evening a week in a private hospital so their appointments can be limited.

However, the massive advantage of having private health care is that when admitted for hospital treatment as we often are with UC, you can stay in a private room, often on a a private ward or in a private hospital. This is like being in a five star hotel with your own ensuite room, TV, DVD player, Radio, telephone and a nurse at the end of a bell to do anything at all for you including bringing you cups of tea! You also have proper, edible, delicious food. When on an NHS ward it is like going back 100 years to an uncomfortable bed ona ward of about 20, very little nurse interaction (normally they just do your obs and give you your meds with little conversation), the food is horrendous – literally slop. Last time I was in the private ward was closed so I had to be on a normal ward for a couple of days. One meal time they literally gave me a plate of what looked like diarhoea. It would have been at home on Oliver. The crap they feed people it is a wonder anyone gets better. You also have to share a comunal bathroom and toilet which again, on my last stay was horrendous. There was literally shit on the floor of the toilet which I had to frequent and despite asking a nurse to clean it after an hour I had to do it muyself – foul!

Unfortunately the private ward in the hospital I go to has been closed and may not be reopened by the time I go in. I can’t have my op in the local private hospital as, like most private hospitals, they don’t have ICU (Intensive Care Unit) facilities and it being a major op my surgeon understandably wants the back up of an ICU. This could entirely change my experience and make it far less pleasant – actually hellish. The other problem with a general ward is the crap visiting hours whereas privately you can have visitors whenever you want. Fingers crossed they reopen a room!

So there we have it, my synopsis of the NHS and private health care in the UK – probably not at all clear but I tried my best.

Now I have to go back to waiting for the phone to ring…

Getting a word in edgeways is not something we Husbands tend to worry about too much. However I have been asked to contribute my thoughts in order to give an idea what it is like to be controlled by UC but not actually be ill with it. Whilst I know that the pain and discomfort that my wife has endured for the last 10 years is real and truly debilitating and the road she is on right now through the operations must be terrifying, it is also a fact that myself and the rest of our family, by association, are affected by this illness. Each time it flares up we as a family unit find ourselves limited in what we can do and achieve together. The highs and lows of this illness also make it hard to find the kind of stability we need to move forwards together. It also changes the nature of relationships as one person is cared for and the other becomes carer.

There are lots of aspects I don’t like about living with this disease, but by far the worst is the knowledge that I can do nothing about it. Watching someone you love suffer is nigh on intolerable and (often subconsciously) emotionally draining. Wanting to do something to help them and learning that nothing you can do will make a difference is very, very hard. For years, we have been through the cycles of illness and drug induced semi-recovery. Each time there is a relapse, I personally go through all the things that I can do to make her ill periods better – do more chores, let her sleep, avoid giving her any undue anxiety or distress and so on. Over time we have learnt that, as thoughtful as these things are, they do not contribute to any kind of recovery. Sometimes these actions can contribute to delaying getting life back to normal – I sometimes find it hard to view my wife as the strong, independent person that she really is when she has just spent weeks in hospital attached to a drip and months exhausted and in pain.

I know we are heading back in to this territory again now that we have surgery firmly on the cards. I also know that with all our experiences of the last 10 years we are better positioned to cope with the transitions than we have ever been. Uniquely, there is light at the end of the tunnel; a destination rather than just a temporary and unfulfilling respite. This permanency should make the move back to the normality of family life a much smoother process.

I guess in a few months time I will no longer be able to get a word in edgeways, so I should add my 2 pence worth whilst I can!

Today has been busy. It’s not been a great day for my UC – lots of bleeding and pain but I have managed to get on with quite a bit which makes me feel satisfied.

This morning I decided to bite the bullet and wear my trainer Illeostomy bag.  It’s kind of weird.  The stoma spout (imitation of course) for a loop ileostomy (which is what I shall have) is a lot larger than I envisaged.  The bag fit quite snugly to my skin and was comfortable to wear, so much so I forgot about it most of the time.  The only thing is it does sort of float off the skin and I could see it under a t-shirt for this reason.  However, I am not too concerned as this is just one type of bag and I know there are a host of them to try before I get the one I like best.  When I wore a thicker top I couldn’t see it at all.  My only concern was when I raised my arms and my top raised, it sent a wave of paranoia through me and made me go red with anxiety.  I have decided that to combat this I need to buy some long vest tops which I can wear and tuck into my trousers to prevent it from being revealed. Most of my trousers are high waisted (I have a penchant for 1940’s style high waisted trousers) so this won’t be a problem but even high waisted trousers don’t completely hide the bag.  All in all it wasn’t nearly as bad as I had imagined and I am certain I can live with it happily enough for three- four months.

In preparation for my operation I also did more shopping.  This time it was for more bedding; mattress protectors, pillow protectors etc.  I am preparing myself for leakages and although we have all of this stuff it wasn’t water proof so we needed new.  I also needed an extra set of bedding just in case.  I think I am about ready for this but I am sure I shall think of other ‘essentials’ as we go along – my husband is cringing at his bank balance

On a different note you will see from my previous post that Megan left a comment which included the suggestion of a ‘no colon’ party and being very, very open with friends and family.  This was something she and Mark did during his ops.  As soon as I saw this I cringed and then I smiled.  I cringed because, correct me if I am wrong, but I feel this is definitely a very un British thing to do. I am not sure we are any good at going about celebrating the removal of bowels with parties .  I smiled though as I thought it was a fun idea.  For me, I shall not be having a ‘no colon’ party.   We will celebrate but  we shall do so by getting on with our lives and getting back to things we love doing together as a family and a couple as quickly as possible and we shall definitely have a fantastic New Year this year to celebrate our wedding anniversary and a new start UC free.   I think I am very much the type to just get on with it, with minimal fuss.   That doesn’t mean to say I am not open though.  I have been quite upfront with my family and friends but I only talk about it if they ask me or I feel it is important to know certain details.  Some people just don’t want to know and others want to know in intimate detail. One thing is for sure, I can’t see myself being too keen to show people the bag but we will see.

Once again this week is set to be busy but I hope that at some point soon I find out the exact date of my op. We really need to sort out our childcare.  We have provisionally discussed arrangements with our parents and our childminder  as well as friends, but nothing is set and I know people will want to know what we need from them so that they can make plans over the summer too.

Finally today, I am going to try and make my blog more visually interesting with photos etc – give me time though as this is not my forte.  I have also asked my husband to start making entries to give an idea of how things work from a relatives perspective – hopefully he will.

Time for me to goodnight to my boys and try and make something out of my evening before I fall into bed.

I have been incredibly tired this week.  I have been losing a lot more blood so I suspect my iron levels have dropped.  I am on ferrous sulphate but perhaps need to increase it – I shall have a blood test done next week to check. I don’t like taking more than one iron tablet a day as they constipate me and irritate my UC but at the same time I need to keep my iron levels healthy before the op.

I was so tired yesterday (Friday night!) that my husband walked in at 6.30pm and I handed the kids to him and went straight to bed, something I haven’t done in a long time.  I was fast asleep by 7pm – before my boys!  I slept until my boys woke me at 7am having been up twice in the night with my UC.  I then struggled to get out of bed, finally emerging at 9am.  Fortunately I have a wonderful husband who finds it no problem taking care of the children.

This morning we watched a steam train use the line outside our house, coming from York to London.  I love steam trains, there is something incredibly nostalgic about them.  It is due past the house again in ten minutes so we shall watch it from the bedroom window – the boys love it.

The rest of the day was spent at the supermarket, literally.  We went to a huge ASDA (owned by WalMart) in MK which is quite a drive but worth it for everything you can get there.  We tend to go every few months.  I bought three new pairs of PJ’s and a lightweight dressing gown in preparation for my hospital stay.  I also bought my sons school uniform as I figure that come the end of August shopping won’t be on my agenda.  It kind of depressed me to think about it but I figured that I would need a few changes of clothes as I guess being new to an illiostomy bag accidents happen   If anyone reading this has any advice on what I should take in with me then do let me know.

Well, it is nearly 7pm and I am still up – doing well so far.  I shall have to trot off to bed soon though as I am getting to the point where my head is so fuzzy with tiredness I can’t concentrate on anything.  I am hoping that being well again will mean I won’t feel like this anymore, that maybe, one morning, I will wake up and actually feel like I have had a nights sleep and am ready to tackle the day.  My consultant said ‘you will feel normal again’, this is great but I honestly have no recollection of what normal is, ten years of this and this is normal to me.

Off to watch the steam train…..

Still no news on a date although I have spoken to my surgeon’s secretary and although she can’t confirm just yet she doesn’t see the 25th July as being a problematic date as the consultant is on holiday before then – yay! Mr B had said that he needs to have a clear diary for a month after the surgery in case any complications arise and I had considered that the chances of a consultant not having a holiday in July or August are slim – but I am wrong

I will be so glad when it is confirmed as it will be nice to plan and know for sure when everything is going to happen.  Things in my head have changed loads since my appointment with Mr B.  I still can’t get my head around the fact that all being well I shall be bag free and effectively normal after 4 months.  This is such a huge turnaround from the position I was when making the decision to have surgery based on an 18 month trial of operations.  I guess the drugs failing with a bad reaction in February was actually a good thing.

I feel very excited and hope very much that I am up and about, happy and healthy come Christmas.  To celebrate the new year (and our ninth wedding anniversary) knowing that we have no more foreseable major health trials will be phenomenal.  I am trying not to get too ahead of myself as I know that complications can always arise but I guess I need to be positive and hope for the best otherwise I wouldn’t be able to do it.

I feel like an enormous weight has been lifted from my shoulders and I can breath again – it can only get better and better.

On the downside, right now I still have Ulcerative Colitis and it is not being nice to me.  I am incredibly exhausted but for some reason I have this mental defect which tells me the more exhausted I get the more I have to push myself to do stuff.  For example, there is a fundraising summer fayre for B’s school this evening.  I am not going as it is 5pm-8pm and N won’t be home in time to come with us.  A summer fete with two children wanting to do this, that and the other is not easy! I am far too exhausted and it is also not a good time for my colitis.  To compensate for the fact I am not going I made ten jars for the jar tombola (just filled jars with sweets and crayons etc) and decided last night at 5pm to bake cakes. Now, you know, I love baking but I get carried away and instead of just doing 12 fairy cakes and 12 Crispy cakes which my energy levels could just about have coped with on top of making dinner and packed lunches, I decide to make 24 of each and two banana loaves!  It about killed me and took hours!  It is also far more than any other mother I know has done (they have done precisely nothing!).

I have dwelt on the fact that I constantly feel the need to push myself right to the very edge until I am stuck on the loo for over an hour and have to go to bed exhausted and in pain.  I think it is is because I refuse to let my UC be an excuse and because it is an excuse I go against it.  It’s twisted but those Mum’s who are healthy and have no excuses just give in to life’s ups and downs and have many moments of laziness and what they call ’stress’ (over the fact they eat too much, drink too much and don’t do enough – some people don’t know how lucky they are!), whereas I just can’t do that.  I guess it is also because I know that if I was healthy I could achieve an awful lot more so being ill and struggling through everything I don’t feel like I even nearly reach my potential.  UC makes me want to push myself to reach my potential even though my potential is limited because of my UC.  I just hope that when I am UC free I am able to reach my full potential and push myself to do it because I HAD UC and know what it is like to be restricted.  I don’t want to be one of these people who whinges about lifes little stresses and gets bogged down in being reactive rather than proactive.

Anyway, I am going to shut up now as I have moved into waffle mode and because I am so tired I can’t form my thoughts clearly in words  – damn UC )

Off to clean – lol

Wow, today has been weird to say the least but it all ends very well!

Today I have had the following news:

1. 10.30am – My sister called this morning to tell me that my youngest nephew has to have an operation and could I take care of her eldest whilst she is in hospital with the little one. Not ideal timing as it will be at the end of July when I hope to have my op. However, I shall do what I can of course.
2. 3pm – last week I was stood with a friend in the school playground when she had a conversation with a childs grandmother as her daughter, a friend of my friend had been taken into hospital. I was told today that this friend of a friend, another Mum in the school playground, has just had a total colectomy! How strange is that? Needless to say I have asked for an introduction.
3. 3.15pm – I bump into my neighbour and he tells me that his wife, a lovely lady I get on very well with, had a heart attack yesterday. She is fine now but in hospital. This made me go cold as on Saturday we were all at the street party celebrating the fact that she and her husband were moving house to a new life up north – needless to say that is to be delayed now. I feel very sad for them but relieved she is okay.
4. 4.30pm – one of my closest friends calls to say she is back early from her year long travels in Cambodia and Thailand. I had wondered where she was as I hadn’t heard from her for weeks which is unusual. It turns out she had opted to have a tummy tuck in Thailand which had gone wrong and she had consequently spent four weeks in hospital out there, alone, undergoing four operations and a great deal of pain. I feel very bad for her as she is now hugely depressed that her trip was cut short and I think she feels silly for having had the surgery in the first place – in Thailand!

So, this was the enormously pleasant news I have had today – how weird is it that I hear all of this stuff when I am due to see my surgeon??

Anyway, my meeting with the surgeon – this is the good bit…

It turns out that because I am not on any drugs to treat my colitis at the moment I can actually have the operation in two stages rather than three. The first operation (procto-colectomy and ileal pouch anal astomosis – i’m getting down with the terms now )will be to remove the bowel and rectum, form the J Pouch and the temporary illiostomy, the second will be to activate the pouch and remove the stoma. He will do this as Open surgery as he finds that results are better that way when trying to get as close to the aqnal muscles as possible. I am so excited as this means, all being well, I shall only have to undergo one major operation and shall only have to have the bag for three months! This means that it will all be over before Christmas, all being well – I am so excited.

This is such a much better prognosis than the 18 month long haul I had previously been told. It makes life seem a lot sweeter I tell you. It means we can actually make plans again.

I know there may be complications and that it may not all go as smoothly as I would like but fingers crossed I will get lucky and all will be good.

I learnt some additional stuff today too. Firstly, the stoma nurse had said that it was unlikely they would remove my rectum. I couldn’t understand this as my rectum is where most of my probs are and also I had read of people developing cancer in their left over rectum which really concerned me. It turns out it is a personal choice but I have opted to have mine removed – good riddance to bad rubbish!

I also learnt that my bladder problems are probably related to my colitis. After years of complaining of a weak bladder to my GP, having tests for various things including diabetes regularly, and complaining of weird right side and left side bladder sensitivity I have now worked out what it is. The surgeon was explaining that their is a tiny risk of the tubes which take urine from the kidneys to the bladder being damaged in the operation as they run so closely to the bowel. In effect it is possible that the inflamation in my bowel might be effecting the nerves of these tubes and making me feel like I need to urinate all the time. So, I get rid of two problems for the price of one – yay!

Supposedly with the pouch you are lucky if you only have to go go to the toilet twice a day. Most people have to go 5-7 times a day with some going as many as 8-10. My surgeon explained that this is because the small intestine should be a tube through which faeces pass quite quickly. By turning it into a pouch you are effecting the cells and the bacteria of the bowel and it takes time for it to adapt to its new job. Eventually it does start to function much like the rectum but this can take some time. However, I understand that there will be no pain, no blood and trips to the toilet won’t be half an hour each time! I hope this is true and I shall be in touch with certain people (whom I have ‘met’ from this blog) in time to find out.

The surgeon talked about Pouchitis. Supposedly the odd lucky patient will never suffer from it but nearly everyone has at least one episode in the first year with some having frequent episodes. Nearly all incidences are treatable with antibiotics. The most serious case may mean having the pouch removed and a permanent illiostomy but supposedly such cases nowadays are very rare – my surgeon has never had one.

All in all I feel very excited and can’t wait for his secretary to contact me with regard a date – bring it on!!!

The last few days have been a little intense.  On Monday evening I had a bit of a meltdown.  I guess the signs were there but it still took me by surprise. I spent the evening sobbing.

I have had a lot of counselling in the last decade (largely nothing to do with UC but PTSD due to traumatic childhood experiences – probably the trigger of my UC) to recognise grief and realise that this is now a process which has started.  I hate grieving, it’s a pain to be honest and just takes up too much energy but I also know that it has to be dealt with and gone through otherwise it is just bottled up for a later date.  I wasn’t expecting to experience it so soon but I guess the feeling that the UC is nearly over for me has set the process off.

I just felt overwhelmed with sadness for all the times in my life which have been negatively affected by UC.  I felt consumed by the loss of my carefree times in my twenties.  I am now 32 and the last decade of my life has been largely ruled by this disease. Don’t misunderstand, I have had many, many wonderful times and could not be luckier to have an amazing husband who has been there every step of the way no matter what (and believe me I have put him through hell more than once with my emotional or physical needs). I also, of course, have two beautiful children who amaze me.  I just wish that all of these wonderful facets of my life had been more easily and less painfully nurtured.

Still, one day, I am sure I shall look back on my UC as the making of me and the journey it has put me on as enlightening and in many ways special.  All traumatic events are much easier to deal with whilst they are going on, it is after the fact that it is hard.  It is ultimately incredibly exciting to know that I am facing the poing of it being ‘after the fact’

This evening my husband and I shall be meeting with my surgeon to go over the surgery and hopefully make a date.  I really want to know when it is going to happen now so that I can move on.  I also have quite a few questions.

Thank you to all of those who have commented on my site recently and allowed me to discover their blogs as a result.  They have al been so helpful and have hugely contributed to my list of questions for my surgeon.  I know I should reply to your comments on my blog and shall but in the meantime I have found it much easier to reply by email.

So, I shall update you tomorrow.  In the meantime I am feeling a lot less cloudy today and have jumped one emotional hurdle

There is no rhyme nor reason with this illness is there?  I shall explain.

On Saturday we had our annual Street Party, a lovely occasion when all of the families on the street bring out their BBQ’s and garden table and chairs and we all sit outside, in the sun, eating and drinking all day until late whilst the kids play on a bouncy castle we hire.  It is a day we all look forward to as it is so much fun and so relaxing – we have lovely, lovely neighbours.

On this day I felt as tired as ever but ate what I wanted and got on with it all and lo and behold my UC was good.  No urgent rushing to the loo, no cramps or pains.  The only symptom was major bloating at the end of the day, which I put down to eating so much rubbish.  I then thought about what I had actually eaten and realised it had in fact been very little and not as much rubbish as I had thought – and certainly nothing which could have caused so much bloating.

By 3am I had woken up twice feeling very sick.  I tried to vomit but there was nothing there so I just went back to sleep in the hope that it went.  By the morning it had but then I had a bad hour with my UC and was exhausted, so much so I slept for two hours.  All day Sunday I had that terrible throbbing pain in my rectum and lower back but by the evening it was much better.

Then we get to this morning.  UC with a vengeance! I can’t stop going to the loo and am bleeding massively and generally feeling pretty unwell.  Saying that, I still stubbornly walked to school, took my son to playgroup until 11.30am and managed to walk back.  I am being rather daring and just think ’sod it’ if I have problems I shall just find somewhere to go or have to walk home in a mess!  I am determined to not let this stop me anymore than it already is.  Fortunately I didn’t have an accident and there were plenty of loos on my travels but at one point I had to run to get something for my son and thought ‘hmmm, not a good idea’.

When this disease flares up it creeps up on you and steals bits from you as each day passes.  Maybe because it is nearly over for me I am noticing everything more but I can see as each day goes by things are gradually getting worse.  I can no longer do the number of chores in a day I was managing which means I am constantly behind and feel stressed as a result.  I can no longer dance much or do as much exercise at all which is driving me batty as I need the adrenaline rush from it.  I can no longer socialise as I was as I am constantly conscious of pain and the need for a toilet. It’s a depressing thing but despite my acknowledgement of all of this I feel good and just can’t wait for this op – roll on my meeting with the surgeon on Wednesday.

Aside from my whinging I am now writing a list of things I can do when I am recovering from this op, so far I have:

• Make tile coasters – inspired by Ali and the fact I have two packs of white tiles leftover from some DIY.  I have bought some ceramic pens and some felt and shall be making coasters – I love doing stuff like that
• Decorate some plain white gift boxes and baskets I have for Christmas
• Read about herbs and what they can be used for in cooking and medicinally (herbs interest me – Pagan stuff in general interests me  – not that I am Pagan though)
• Read up how to be more green  – I would like to be much more green that I am so figure this will be the time to sit down and read about everything – something I don’t have time to do now
• Make a bird box – something my husband bought me for my birthday – I want birds in my garden
• Knitting – I always knit when incapacitated, it’s very therapeutic
• IPod – sort my music library out and download some more music, something I never have enough time to do

There it is so far – hopefully I will be able to look at this list on a bad day and inspire myself to do something.

On a final note I shall say that despite my whinging and moaning on here UC does not rule my life, I don’t let it.  I choose to use this blog to complain about it as I don’t like to complain about it (much) elsewhere (my husband might not believe that   ).  I hope I am not the moaner I sound like on here

I had the most delicious birthday. N and I spent a day, child free at Rutland Water.  We did nothing but lay in the sun, eat, read, chat and have a lovely walk around the water – it was heavenly.  We spent an hour with my lovely Mum at the school she works at (it looks more like a beautiful stately home than a school) and then we went for Thai food – my favourite.  It was so , so nice I just wish it hadn’t had to end.  My colitis didn’t rear it’s ugly head much and generally I felt well that day – although doing nothing at all probably helped!

Since then I have felt exhausted. I have been in bed by 9pm each night and have really struggled through my days.  I haven’t achieved anywhere near what I wanted to this week but I have done the basics which is better than nothing.  I am starting to get very frustrated that I can’t do as much as I want.  I haven’t even been to my dance class this week!  I know it is only going to get worse so I ought to get used to it for a while but it is still bugging me.  Weirdly enough my UC symptoms aren’t as bad as I feel.  I have a dodgy hour or so in the mornings, same again around lunch time and same again around bedtime.  This is definitely an increase but there is no major urgency, quite often no blood, although other times there is lots, and not a great deal of pain.  It’s seems ridiculously low key for someone about to have an operation – I guess I should be grateful.  The only major problem I have is the constant ache in my rectum and lower back.  This is really making my days tiring and painful and prohibiting me from walking too far or being as active as I would like.  However, this ache reminds me of why I am about to have the op so I guess in some macabre way it helps.

I am in for a busy weekend so I really hope I manage to muster some energy from somewhere. This evening I am off out for dinner with friends at a dance friend’s house.  It will be lovely to socialise with them outside of dancing.  Tomorrow is our annual street party, a lovely occasion where the kids just play out on the bouncey castle all day, the men stand in front of their BBQ’s with beers in their hands and the ladies sit eating and drinking wine gossiping about anyone who isn’t there All in all it should be a lovely time provided the weather holds.

I have been willing my little one to have a nap for the last two hours so that I can get my floors cleaned and have a sit down with a cuppa in peace and quiet – he is having none of it! I guess I shall just have to have a cuppa whilst watching Curious George