Wednesday, August 27, 2008

One of the biggest differences in life now compared to life when I was ill is change (this blog is a bit of a stream of consciousness, bear with me).

Whilst I was waiting for my transplant, the only thing that would ever change was my health status, or at least that's the only really significant thing I can remember changing. I am not sure if this was carefully manufactured (people ensuring stability in all other areas of my life) or whether it was logical (if you can't get out and do stuff then nothing really changes) or even whether it's just my memory focusing on the part of my life which captured most of my time and attention. But I am fairly sure that in everything else there was a reassuring yet dull consistency, one which is artificial, whatever caused it.

I am still quite surprised at how fast the course of life can change this side of things, and I’m not sure I’ve quite taken it all into my stride yet. I always prided myself on being so independent when I was ill but sometimes when change occurs now I still find myself reaching out to someone just for a bit of reassurance (normal behaviour? I am unsure). Luckily for me, the tight-knit circle of people I had when I was ill have gone nowhere, but we just have a much more balanced support relationship now. For example baby sister number one (middling) is turning 21 this week (sob) and it was jointly agreed that her room needs a bit of a make-over (there are still toys of mine in there from when I was 8). I was able to spend the entire morning there helping tidy, dispose of and clean and it felt fantastic just to be able to chip in and do my bit. I don’t think I’ll ever get over that joyous feeling of doing something “normal” and remembering how impossible it used to be. And I never want that feeling to fade.

So yes, change. I’d like to ask for some feedback actually; whatever stage you are at in life (not ill, transplantee/patient/CF whatever) how do you adapt to change? Am talking about larger movements in life (job, house etc). Are you confident with where you are going next or is life still a bit of a mystery that you’re feeling your way through? I still love the adventure; it's exciting and has movement, pace and opportunity...I’m just wondering if I’m the only one without a map.


Toria said...

It's not quite the same, but while I was pregnant the team kept a REALLY close eye on my, I rarely went more than two weeks without seeing at least someone. Since I've had him and got over the worst of the recovery things have gone back to my normal of seeing someone about once a month. I often find myself worrying and thinking someone ought to be doing my lung function or 'isn't it about time I had IV's' but the truth is I just don't need them now I'm stable!

The other thing, and what I actually find more weird, is that there is no regular hospital appointment for Edward. I'm so used to having someone tell me I'm OK, that it sometimes freaks me out a little that no-one is telling me that he is! I think I grew up in such a bubble of CF it never occurred to me that normal children don't go to hospitals all the time, and Edward is normal.

I know how weird I often feel after I've been in hospital for just a normal 2 week IV admission, I come home and everything seems really loud and bright and fast for a day or so.

So all in all I think it's perfectly normal, you were under such intense treatment for so long, and in such a state of hiatus life-style wise, to suddenly be back in the real world without someone telling you are OK as you do it must take getting used to.

Anonymous said...

No Em your not the only one without a map, I'm coming up to 37 and still don't know where I'm going and i'm not good at change either. I often wish I could turn back time to a few special years when I was living at home with my parents and sister, i had no worries then, life only seems more difficult when your an adult whether your ill or not.
The only change I think I'd be good with is my health, just wishing that my kidney's would work better and that I could eat chocolate again would be a God send, until that day i guess i'll keep pootling along the best way I can, but one thing that alway's makes my life worth while is knowing that people like yourself have been given that chance of being " normal". For you I guess it's just a case of getting use to the fact that your no longer that ill person any more but someone who has beeen given their spark back.... long may that spark keep burning bright.

Anonymous said...

we are all just muddling along, making decisions in life which may or may not be the right ones, that is 'normal'! we all need reassurance and guidance,without that many things can be quite daunting, nothing unusual or to worry about! Just keep enjoying your new life you have a great network of family and friends who are a great source of help and advice! Keep well! xxxx

Anonymous said...

Hey there Em

I have never had a map I just tried out new things (going to uni, jobs etc) until I couldn't anymore an then focussed on waiting for tx. That was the one true focus I had to get my tx, just like you.
Well afterwards how things like to change and surprise you. I am 5 yrs post op in Oct and all the things that have happened to me I could never have even dreamt.
My philopshy is that you will be led to an opportunity and when you are grab it with both hands and go for it and enjoy the ride. Sometimes it might not work out but what the hell you have tried it, rely on and the people and methods you always have, trust your judgement. always go with your gut instinct. Its nice to have an idea where you want to be in the future but dont get too anxious if you don't get there it just means you have followed a different path. Enjoy your journey.

Keep well and stay happy

Rob (Bobster)xx

Anonymous said...

Your not weird Em, ill or not ill i think most people need time to adjust to big changes, especially when its to do with you are others around you growing up and moving on.
lots of love

emma xxxxxxxxx

Sarah Milne said...

There are no maps. I do have lots of lists though. I am a huge one for breaking every major thing down into a series of lists and smaller plans. Each thing then seems more managable and less daunting. Change is a very good thing, in general
lots of love Sarah x x x

suzie said...

Hiya Em,
I'm also trying to get used to things changing at an alarming rate these days. I sort of have a map but reserve the right to change direction whenever I feel I'm getting a bit lost.

Viewing the journey as though its not set in stone and the direction can be changed any time takes the pressure off for me and I seem to acheive more looking at it like that.

Keep doing what you're doing and dont worry about not having a map, its all normal I say :D

Sending lots of love and a big grin.

Gilly said...

I feel I adapt quite well to change, however, change of job for hubby and being without work for a short period whilst waiting for clients to build up has proved to be very difficult for me, but I think that is mainly due to Grace,(not her fault) I just panic that she has had such trauma in her life thus far that not being able to afford a holiday or having to move house etc is something that I feel she should be shielded from at all costs. We are far from such drastic measures, but my mind is very wandery and thats often where it leads me.

Having said all of that, I am very happy to be leaving the last chapter behind and am positive that things can only get better (I'm thinking of Heather Small now)

This wills me to take a leaf out of the books of others and see the positive and maybe more spiritual aspect of such things and possibly realise the 'triviality' and try to better myself by helping others less fortunate.

So maybe a map would be nice or someone to just guide the way so that we don't panic, but certainly you are not alone in that way of thinking, and understandably so.

P.s. Its not my birthday until November 5 - Bonfire night - Remember remember the 5th of November!....came into the world with a bang and such jokes over the years...... but thank you for the good wishes and I will save them up until the day.

Much love, Gilly xx

Anonymous said...

Life's definitely a mystery. We aren't scared of change; we moved town/house/jobs all in the space of a year without really flinching about it.
Health wise it's definitely a mystery but I've learned that all I can do is take the pills and the surgery as and when needed and put my faith in the professionals.
Over the years many worries and insecurities have faded but new ones creep up and always take me by surprise.
My biggest life lessons are from my own parents mistakes. I wish they had had a map. I don't have a map as such but I know where I'm not going. Maybe I have them to thank for that?

Audrey xx

Anonymous said...

Change affects all of us every single day in some form or other, changing environments, house, to outdoors to train or car, changes at work, processes, policies, rules and so on and so on….

It’s always harder coping with the larger more prominent changes and over time I have learnt to accept these changes and deal with them as one of the everyday ones, that is to also change the way I think, feel to accommodate that particular change and if I still can’t deal with it then change my own plan of action if I can… I don’t really mind change so much anymore, I find it varies what I do and makes life more interesting in general and mostly it works out for the best in the end.

As for a life plan, I am sure that most people have an idea of what they want to do, where they want to be by a certain time in life, I certainly do but life is such that it won’t always pan out the way we intended and the best thing to do is to just keep moving with it and not to be too strict with yourself or what you want from it.

At the end of the day, life is there to enjoy, change is a fact of life and I firmly believe that if a change occurs, then it was really meant to be that way, so I speak to someone close, decide what I want to do and work towards taking on the next change, whatever or whenever that may be..

Hope that helps in some way.



Anonymous said...

Hi Em

You're not alone! I think whether ill or not we all find it a bit scarey when change comes along, and the only thing constant is change!

I find focusing on the things i can control helps me, and the things I can't I just try to go with the flow,and enjoy the change and the challenges that brings.

Good luck and enjoy the constant change!