#RehabLegend Patient Stories

Louise GallieYou can follow the blogs of these #RehabLegends

Louise Gallie @LifeBoatGeek

From delirium to reality

Mark's story

Hey,

I don’t know your name, but your nurse told me you are having a difficult time. My name is Mark, in 2010 I had to have an emergency operation to remove my entire colon that left me with an end Ileostomy and no hope of ever having it reversed. I was 23 at the time and to me the world had ended, I had to cope with this thing sticking out of my abdomen requiring changing regularly and having to change how I did things. That said it didn’t just change things for the worst for me it gave me back control after having life long ulcerative colitis, it took me a few months to understand how to cut bags and put them on so they stayed on but now nine years on I am pretty happy with my stoma. It represents what I have overcame, I have had a lot of abdomen operations since and my abdomen is covered with scars. While at the time those scars where symbols of the worst times in my life they where also symbols of what I had overcome, the things I had defeated to get where I was.

 In December 2015, I was admitted to my hospital’s ICU, I spent 2 and half weeks in a Coma. My recovery was hard I lost 25kg in my time in ICU and was ventilated. By the time they removed my breathing tube I was very weak and not able to speak or walk, I was angry at everyone and myself because they didn’t understand what I needed and I couldn’t do the things I did before I ‘woke’ up. My recovery time in hospital was not easy as everything was a struggle but with a great team of staff and the support of my family I got a little better each day. You won’t see your progress until someone points out a week ago you where not able to do the things you are able to do now. I was in hospital for 17 weeks because of my complex issues as well as catching flu while in the hospital. Your recovery will not be quick or easy but you will get better. Neither ICU or a stoma will stop you doing things in the future and will probably give you confidence to do things that you might not have done before. I now share my experience with medical professionals giving talks about my time in ICU and its effects, that is something I would have been scared to do before ICU.

The fact is that you have survived ICU, that is no small thing, and you are not alone. You are far stronger than you know or feel right now. You have overcome a huge issue because everyone in ICU is there because things went very badly but you came through, you beat it. When things where tough you hung in there and said NO. You are in an excellent unit filled with great people who want to help you not just get home or out of hospital but who want you to get back to normal life. What I would suggest from my experience is have a big goal let’s say its getting home to spend Christmas at home with your family. But to get to that big goal you need to set yourself little goals maybe for today, maybe for the week, like maybe to start with sitting in your chair watching tv or reading a book for an hour. Then maybe going for a walk to the room door/ nurses station/ unit door but have a new goal which expands on your previous one. You have done the hard bit you are still here but to get home and enjoy the time when you get home it will be hard work. You will have days where you will feel like you can’t do it or it is too much. Speak to the staff and your family, it is ok to feel sorry for yourself every so often. In the end the hard work you put in with the staff (like the Physio terrorists) will be worth it when you get home and try and remember the staff are trying to help you get better even if it doesn’t seem like it at the time.

You do not know me and we might never meet but we are brothers because we are ICU survivors. That is not a badge of shame but one of determination and strength. I wish you all the best in your journey and I hope this letter has helped you in some way and I hope to hear that you have left the hospital soon.

Yours Sincerely

Mark

@MarkThomHudson

mark hudson

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