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Isolation tips

Hi everyone,

It's Amy here from Anthony Nolan. We recently started a discussion on our Facebook page about the challenges of isolation.

So far we have had some great suggestions on dealing with isolation including starting a blog or Facebook page to update friends and family, arranging your music collection, checking whether the hospital has wifi or good mobile connection, and investing in Netflix or other TV and film subscriptions.

What was your greatest struggle during your time in isolation and did any of these things help you? What are your top tips for others approaching isolation?

You can look at the Facebook post at https://www.facebook.com/anthonynolanpatients

Amy

Comments

  • I was thankful of a decent TV in the room with freeview TV. As I spent much of my time in bed, most of it was spent either sleeping or watching TV. Strangely, whist my appetite was very poor I found that I enjoyed watching food programmes more than anything - Man vs Food, The Great British Bake Off, and Masterchef were all favourites of mine.

    I also wrote a blog, though the motivation wavered at times when I was feeling particularly weary. I found this quite therapeutic and a good way of updating family and friends on my progress.

    Another thing that my time in isolation gave me was the opportunity to finish my book. I'd written a family history book about my ancestors and their dubious activities as the leaders of a criminal gang in the 18th century which was largely complete when I was first diagnosed. My time in hospital gave me an opportunity to proof read and improve the final draft ready for submission to publishers.

    I guess most hospital these days are like the one I was in and have some form of Wi-Fi service for patients which certainly helps keep in touch with people, by email, social media or Skype, so the feeling of 'isolation' is reduced.
  • My tips! (as already shared with Amy, but I thought would be good to put here).

    1. make your room homely. Put up cards, have cushions on visitors chairs.
    2. although you can not have fresh flowers you can have artificial flowers and again these help to make your room homely
    3. if allowed, take your own bedding
    4. Have a routine! I always had a shower after breakfast and changed into clothes. I did not stay in my pj’s. I also put my make up on so that I felt ‘good’ about myself.
    5. Meditate. If you don’t already meditate being in isolation is the perfect time to learn. It really helps to create a calm and peaceful body, and allows you to cope with your challenges in a better way.
    6. Think of at least 3 things that you are happy about every morning and every evening. By focusing on the things that you are lucky to have and are grateful for it helps to stop focusing just on your illness and the bad things.
    7. Create a playlist of music to suit different moods. Ie, an uplifting list that makes you want to dance!, a calming list for moments of sitting there peacefully.
    8. Exercise! Create a gentle exercise routine to follow and try to do it, or at least some of it each day. You will be glad you did.
    9. Breathe deeply. Breathe into your stomach, not just shallow breaths.
    10. Moisturise your skin and nails daily.
    11. Write a blog to update family and friends on a daily basis. This was invaluable to me and was my lifeline to the outside world. Allow guests to comment on your blog and encourage them to tell you what they are up to. It helps, and also makes you feel connected to reality and life as it should be.
    12. Learn a new hobby, I taught myself to crochet.....very therapeutic.
  • Here are my top tips.....

    My experience as a professional person in their thirties receiving a transplant was...

    1) From the outset treat this as a business trip - i.e. a necessary evil during which time you will have the opportunity for sporadic contact with family and friends. Sometimes you can reach people by phone or online, and sometimes you don't have the opportunity.

    2) Connect to the hospital wifi and take plenty of DVD box sets - don't worry about the content of the DVDs, I watched a whole box set of The Inbetweeners!

    3) Use every amenity and opportunity available to you, with humour. I got hold of some exercise bike pedals from a nurse and used them every day.

    4) Create structure to your day. Get up, showered and dressed every day even if you have to sit down afterwards. You will quickly get used to the routine of the hospital, embrace it don't use it as an excuse not to do things.

    5) Have a chat to everyone who comes into your room from the doctors and nurses, to the cleaners and maintenance people. Be as jolly as you can and whatever happens be nice to the staff. You will quickly build relationships with the teams of staff which will feel more like being around colleagues. I have watched more than one major sporting event with nurses popping in and out to see the score

    6) Always remember that you have your own private room with en suite (I have stayed in much worse hotels). This always will be better then sharing a ward with other people in my book!

    7) Push the boundaries, I was nervous about cheekily asking whether I could leave my room at a weekend when the hospital was quiet wearing a mask....turns out you can, as long as you are getting better and take the appropriate precautions

    8) For your partner or close family members - visitors will have to follow certain routines of hand washing and apron wearing when they enter the room, but don't let this discourage them from contact. Get them to check with the nursing staff if they can give you a hug - this makes all the difference to you and them

    9) Have a positive attitude. I interrogated the doctors about every procedure and drug given to me - it is genuinely interesting!

    Hope this helps

    Ruth
  • Hi there, here's a few tips from a parents' perspective - my 9 year old son had a transplant.

    •Take as many photos/pictures/personal items with you. You are usually allowed to decorate the room for the duration of your stay - children can draw on the walls at Sheffield Childrens Hosp - my son's visitors all signed the wall! Make the room your temporary home!
    •Consider subscribing to Netflix (for films). They usually offer the first month free and you can cancel at any stage. Netflix has a wide choice of films/programmes for both children and adults
    •Consider subscribing to Spotify (for music). You can download as much music as you like and, again, they normally offer the first month free and you can cancel at any stage.
    •If the hospital doesn’t have very good wifi (Sheffield doesn’t!), it maybe worth ringing your mobile phone provider to see if they can offer you unlimited internet access. Again, they sometimes offer free month’s trial. This way, you can use your mobile phone’s personal hotspot to use your ipad/laptop on the internet for no extra cost.
    •Face time/Skype is a great way to keep in contact with family and friends.
    •Check if you have access to a wii console - my son did most of his physio on the wii which kept him mobile and was a great distraction
    •If you, or your child, have a bad day - do not beat yourself up, just be kind to yourself - tomorrow is another day.


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