The end of the year doesn't mean the end to being a patient!

[michaelseres]

As the clock chimes midnight it is out with the old and in with the new except as a patient that one chime doesn’t actually make a difference does it? Or am I wrong? The turn of the year gives you a chance to set new goals, make new plans and start up new things but the one thing that doesn’t change is being a patient. Does that mean your mindset has to stay the same though – I think not!

My Christmas was a bit like santa’s relationship with chimneys – lots of ups and downs. I picked up what I assume was a virus and ended up back in hospital for a few days. With me a virus seems to always lead to dehydration and with my kidney function going off quicker than a turkey left out of the fridge I soon found myself on antibiotics, a drip and with an abscess on my leg from all my injecting that has now turned in to a lovely great big hole. All of this and I just wanted to be out ahead of celebrations that had been planned.

Frustratingly I missed two major deadlines, my daughter’s 13th birthday

my little princess

and my 21st anniversary but I did get out in time to share New Years Eve with my wife. I also managed to be around for my daughter’s bat mitzvah & disco – although not eating for 2 days to ensure I could make it through the disco was an interesting challenge. I then managed to appropriately embarrass her with my speech, which I thought sounded cool, it contained a twitter hashtag, references to facebook and everything else teenagers use these days. Perhaps it was the fact that I have more twitter followers that upset my little lady.

I hadn’t really appreciated the effect that my back and forth to hospital was having on the kids until this holiday. I stupidly assumed that they took it all in their stride and that it was almost part of life yet this time it really hit them hard. I saw the odd posts that they put up, heard the reactions on the phone and then saw the look in their eyes and it really made me realise the massive affect this all has on them. I think that some of this was due to the fact that I hadn’t been an inpatient for a few weeks so they got used to having me at home and some of it was the fact that I went for routine bloods and ended up staying in so it was unprepared. Finally there was the time of the year so it was no wonder the kids and my wife got very down over the whole thing.

So you see the journey of being a patient or the trials and tribulations of being the loved one of a patient doesn’t alter based on the change of a number. In essence those elements are out of your control, what can change though is what you wish for and what you are going to do to try and make those wishes come true.

For 2013 what will I be doing to make my wishes come true? My biggest wish is for stability in our lives and for my wife and kids to have a year free of the upheaval that has been there for so long. What can I do to make these things happen? In simple terms I can make sure that I do everything possible to give them the normality they deserve when the times are good and just hope that when we have a few blips they remember many more good things than bad. To deliver on my wish though involves so many things some in my control and some not. I guess that herein lies so many lessons for so many of us. These are my thoughts for what they are worth. I can’t guarantee that I can follow everyone though so I would welcome your thoughts.

Focus on what you can control and don’t stress about what you can’t.

Live every day to the maximum. In other words control what is right in front of you and don’t worry as much about the future because no one knows what the future brings.

Listen to your gut instinct (if you excuse the pun). I think that I have learnt the hard way that often by following what you really think as opposed to over analysing things you can actually make better decisions.

Remember who really counts in your life. Focus on those that really mean something to you. My biggest issue is always saying yes and I’m not sure how to change that so by remembering who really count in my life I am hoping that I can prioritise the “yes’” a lot better.

This is my personal mission. Use your experiences to help others. I cannot start 2013 without ever forgetting what the team at The Churchill in Oxford have done for me. I rely on them for so much and therefore want to ensure that what I have been through can be harnessed and in some small way help other patients. And with that comes my mission to be proper I-Patient – and interactive patient. You can join me for that at Doctors 2.0 & You

Wishing every one of you a very happy and healthy 2013 and a peaceful one. May all your dreams come true.

M

[PatV]

I like what you have to say so much. I have Parkinson's with IBS C, and thought my 3 grown children were handling my problems with as much aplomb as I thought I was. Not. My daughter told me 'do not call me unless it's an emergency'. Wow. I was fortunate to get counseling from the social worker in my neuro's office. And I've got a new GI doctor. I would only add to your excellent list. Find something to appreciate/enjoy every day.

[michaelseres]

Hi Pat, thanks so much for taking the time and trouble to post your comment. I really appreciate it and your excellent last point. I try hard to focus on that although as you know it isn't always easy. I wish at times that i had some counselling but alas not yet on the otherhand I am very lucky to still have the kids and wife around me to be there the whole time. I do worry about burdening them though.

Take care and please stay in touch and I wish you well.