Jiving on Regardless

{April 23, 2009}   Dancing and Organising

Last night I attended my first NACC local group meeting.  It is something I have wanted to do for a long time but have never been in a position to, as all UC sufferers know doing anything in the evenings is a real chore and best avoided.  Now I have all of this energy it is good to have something to focus my time and energy on and I would like to do that for the benefit of other UC/Crohns sufferers. They managed to convince me to join their organising team.  I am a little wary of this as I always find any such organised groups ultimately somewhat political and reluctant to move forward or change.  They have assured me that they very much want ‘young blood’ on the team so I decided to try. I’m keen to be involved but will try not to overwhelm – God knows I can be overwhelming 🙂 I have initially agreed to help set up the group website which would be  fantastic, it has always frustrated me that they don’t have one so to be instrumental in getting that up and running would make me feel like I have achieved something very positive for other sufferers.   So, there we are, I am now an NACC Organising Team member – how life changes!

I have actually had a really good last week and am feeling much more positive.  My frame of mind has been helped enormously by the weekend away my husband and I have just had.  We went to Weston Super Mare for the UK West Coast Swing Championships.  It was AWESOME.  I saw dancers that I haven’t seen since last year and many people I have seen a little of recently but not enough of.  Getting together with everyone for some serious socialising and dancing was fantastic.Watching the competitions was just amazing an I danced and danced and danced and felt fantastic.  Sure I got tired, but only like ordinary people get tired after 12 hours of non stop dancing! I entered the Newcomer Jack and Jill and was thrilled to make the finals.  I got on and did it despite nerves and I was so overwhelmed afterwards that I broke down to a dance friend.  It was a weird experience as I am not one for public displays of emotion but I just couldn’t believe that I had danced in a public competition less than a year after my op.  It’s funny how these emotions creep up and hit you at the most unexpected of times. It feels good to have let go of a bit of that grief and acknowledge that I have come a long, long way in a short time.  I still feel absolutely elated about it all.

I definitely needed that boost. I still have things I need to do to confront about the last year in order to gain ‘closure’ but I have started.  It is definitely helping my mood and I don’t feel quite as lost as I did ten days ago – all feels good 😀


{April 14, 2009}   Dietitian’s Advice

The dietitian I spoke to last week called me today and learnt some interesting stuff.   I didn’t really rate the appointment I had with her last week but now I think about it I have actually learnt some interesting stuff which I thought I should share. A lot of what she told me and i’ll repeat here I knew already but there is quite a bit I didn’t.  I went to her with two main concerns 1) that I am anaemic and I wanted to ensure I did the best I could to get an iron rich diet, 2) that now I have my J-Pouch and I have had to change the way I eat, i.e change from brown bread, rice and pasta to white, I was unsure of what was good for me and what wasn’t.

She asked me which foods I couldn’t eat now I have my pouch and there isn’t that much.  I tend to have problems with the obvious things such as skins of fruit and wind producing foods such as baked beans and cabbage.  This is all normal and may well change as time goes on but for now I tend to avoid them having tried them once and suffered.  On a separate note I have found that the product ‘Windeze’ which is Semeticone, is really good for reducing my wind, which can be very painful.

She advised the obvious things such as to eat more red meats, to carry on eating oily fish (I love Mackerel in Tomato Sauce on Toast for lunch – it’s good try it!) and to eat as much fruit and veg as I can manage with the skins off if necessary.  I manage about four portions of fruit and veg a day which is not far off very good.  She said that normally they would only advise one glass of fruit juice a day but as I can’t eat quite as much fruit and I need the vitamin C to absorb iron I should have two glasses, one each side of the day with my iron tablet and meal to aid absorption of iron.

I was told not to drink tea before, during or after a meal as the tannins hinder the absorption of Iron.  After discovering I actually quite like red wine since having my pouch I discovered this weekend that it poses the same problem with the tannins – damn! I didn’t know about the tannins problem with iron so this was one of the  interesting points.

I also spoke to the dietitian about my concerns over the amount I am eating as I am constantly hungry and don’t feel I can eat any more than I do mainly because I don’t have the time and also because eating any more would make me feel very piggish.  She asked me the question I get asked a lot – am I now my normal weight?  The answer is ‘I have no idea’.  I think I am as this is the weight I have always been when at my most healthy but I have been ill since the age of 20 and being the same weight as I was when I was a teenager isn’t necessarily my right weight now.  I am 8.5 stones and 5ft5.  This makes my BMI 20 which is on the low side of normal.  She explained that any lower and I would be under weight and a ‘normal’ weight can be anything up to two stones heavier than I am.  She said that as a dietitian she would not be concerned about my weight but that doctors would prefer me to put on a stone – a stone! God, i’d have to eat constantly all day to put on that kind of  weight.

She explained that I probably feel hungry as I am more active now and my body is trying to regain weight and heal.  I was advised to increase my intake of calories through vegetables and potatoes but not too much fat as this could send me too far the wrong way over time.  I have, quite separately discovered that dark chocolate with at least 70%  cocoa content is half the fat of milk chocolate and has lots of iron in it – very pleased with this one! 🙂

Mrs Dietitian also advised that if you have an ileo anal pouch (J-Pouch) you can also get pro-biotics on prescription as they are shown to be beneficial to output and pouch activity.  I hadn’t heard this so I shall ask my GP next time I see him I might as well give them a whirl.

All in all it was worth my while making the appointment.  I feel reassured that I am dealing with my diet in the right way and that all is good.  All I need to do it get my iron levels sorted out and maintained and then I will feel even more energetic!

Time to crack that dark chocolate Easter Egg I have waiting on my kitchen side…

Today as been fabulous and difficult all at once.  The street garage sale I arranged went really well.  It wasn’t anywhere near as busy as I would have liked considering the advertising I did but all in all it did well and best of all the weather finally turned and we had a lovely day!  We raised £323!  We still have donations coming in and being pledged so this won’t be the final total.  50 per cent is going to my sons playgroup and then 25 per cent to the NACC (£80+) and the same to my local hospital’s Gastroenterology Department which is raising money for their new Infliximab room.  I am so chuffed, it is a great result and all of my neighbours were absolutely fantastic.  They all rallied to raise as much money as possible, organising stuff to sell, setting up tombola’s and games and generally being fantastically supportive.  They all said that they had so much fun, so much so they want to do it again next year 🙂  It was really nice to see the street socialising and getting together –  community definitely exists where I live!

Today was also really good as five people came along who had either had the surgery or who suffered from UC/Crohns.  Most of those five had never met a fellow sufferer and felt they wanted to.  I felt really priviledged that having seen me in the paper they had made the effort to come along and meet me and introduce themselves.  It was quite overwhelming.  I gave this blog address to some of them so I hope they visit and get to know my fellow IBD blogging friends.

I have felt on the verge of tears all day and quite overwhelmed.  My anxiety was through the roof this morning but did start to calm down as the day progressed.  My husband told me that no one would have known how emotionally hard I found it all – I am good at smiling 🙂

I am starting to feel a bit more positive.  Yesterday I started sorting through my op photographs and I re-read what I blogged during that time.  I didn’t blog in very much detail which I suspected.  It is helping to go over it all and deal.  I shall write about it some more as and when I have the time and energy.  I am acutely aware that some people who may not have had the op will read my upcoming posts and be a bit put off by them.  All I can say to those is don’t be.  Regardless of the emotional effects I have said many times before, and will keep saying, that the op was the best thing I did in ten years.  I will never regret it and will always be grateful for the opportunity to be healthy.  It just isn’t a hurdle to be jumped and forgotten about, in time it will be but until then I have some dealing to do – it’s all good really though.

Time for my bed – i’m shattered!

I think i’m depressed. There, I said it. I wonder if saying it and confessing it is as helpful to a depressive as it is to an alcoholic? I guess experience should tell me ‘yes’ but it’s funny how us depressives forget what the ‘creep up’ is and do our utmost to stay in denial – it’s a bizarre thing. I say ‘us’ depressives. I used to suffer from clinical depression but I resolved this through counselling when I was 26, it was all to do with Post Traumatic Stress from some childhood shit.  I got over that, I moved on and was then incredibly well for years with only the mildest of periods of anxiety…until now.

I’ve felt it coming on for a while and knew what it was but am so disappointed to feel it.  I was hoping that I was anaemic and that this would explain why I have been so down.  I am anaemic but not enough to have that effect on me, the reality is I am certainly becoming depressed if not already there.  I have debated with myself whether to write about it on here or not as I am generally a positive person and don’t want to be negative about post op stuff but the reality is I write this as an outlet for my emotions and I also write it so show the real side of my experiences.  Getting post operative depression as I believe this is, it surely part of the parcel for a fair few and maybe someone reading this will be able to relate.

I have come to the conclusion that this is related to the op.  I guess until now I have had to stay focused on getting through the ops and getting to this point in my life. A point where everything really is perfect and fantastic.  I have an amazing husband who has stood by my side throughout  and who I love too much to describe, I have two amazing little boys who are happy and healthy, we are in a strong financial position for the first time in a long time (and contrary to most others it would seem) and I have a fantastic social life with great friends.  It is when I look at these things that I can see how damned unreasonable bloody depression is.  I have absolutely nothing to be depressed about and yet for the life of me can’t ‘pull myself together’.

This is why I conclude that it is to do with the ops. My major op was incredibly traumatic and something I haven’t ever been able to go into detail about, not even on here.  I know that right now I need to do something about how I am feeling as I am constantly anxious, having mild panic attacks, very, very tearful and generally just very down.  I haven’t been to the Dr’s as having been over this ground countless times before I know they will just hand me a script for anti depressants and leave me to it.  I don’t want the drugs.  In the past I have tried them and a) they take too long,b) I always have bad reactions to them (you know me and drugs!) and c) in the past I have always been able to take positive action to address my depression.  This action has usually been in the guise of counselling but this time I don’t want to fork out the astronimical amount of cash for counselling or even let it get to that point.  I know this is unreasonable so it has to do with having to deal with something, as the American’s say ‘get closure’.

I think the only thing I can do is address the situation that is now consciously but largely sub conciously effecting me and that is what happened during my op and post op care.  It’s nothing life threateningly dramatic but it was emotionally traumatic and very, very scary, I have never been so scared or in so much pain in all my life.  I had to put this all aside to get myself back on to the operating table for my reversal (take down) but I think now three months on my brain is telling me it’s time to purge.  In between my two ops I really did have to repress everything as just going to the hospital got me in a bit of state and for a while I wondered if I could get myself back onto the table for the last bit.  I knew I had to so I concentrated very hard on disassociating myself from the situation.  This is something I am excellent at – a throwback from that childhood shit.  Disassociating only works for so long and I guess it is now time to reattach and deal – Godamit!

So, as soon as I can get round to it I shall purge bit by bit, if I can. I’ll probably come back tomorrow and ‘forget’ I ever wrote this post 🙂

{April 4, 2009}   In the Newspapers!

This week has been a little new and nerve racking. On Monday I had two local journalists call me and interview me about my fundraising for the NACC and my local hospital.  They then arranged for photographers to come out and take pictures of me and my neighbours.  It was so nerve racking.  I hate having my photograph taken at the best of times and wasn’t really prepared for this kind of attention.  Anyway, I managed to rope in some of my neighbours who have been really supportive of the whole thing.  I then had to spend four days waiting anxiously for the pieces to come out on Thursday.

The first I heard about it was from people coming up to me in school tell me how sorry they were that I had been so ill and that they never had any idea.  So embarrassing, I had no idea that it would create so much attention.  I wanted to raise awareness which is obviously very important and if people like me don’t do it then it makes things even harder for other sufferers who can’t do it as they are so ill.  At the end of the day I am not prepared to sit here and moan about people’s ignorance of this condition and not do anything to change that.  Still, I wasn’t ready for the personal attention I have received as a result. I have always been quite open about my condition with my friends and people I feel need to know for whatever reason, be it colleagues, teachers whatever, but I don’t go around telling people willy nilly.  Now the whole of my town knows!  I can’t believe how many people read the local newspaper.

One of the headlines was mortifyingly dramatic proclaiming me as having lead a ‘life of suffering’.  I feel a fraud being deemed as such as there are millions of people out there going through so much more than I have been through.  My natural inclination is to completely play down my experience and tell people that the paper was being dramatic and it was never that bad.  I did this a couple of times and then realised that by downplaying it I am ruining the point of the publicity.  People need to know how bad it is in order to care enough to want to be less ignorant and more helpful and supportive of sufferers.   I had never realised how hard it is to be open about this in such a public way.  I now have complete admiration for these people who talk about their problems and how they are trying to effect change on TV or on public forums.  The local paper was hard enough!

Fingers crossed it is all worthwhile and on Easter Monday loads of people will turn up, buy loads of stuff at the garage sale, have fun and learn lots about IBD which will help others around them  – it’s not much to ask is it? 🙂

et cetera