These are all personal tips from our patients.
Ask for help
Neighbours, family, friends will all be willing to make your life easier and you will need them.
For benefits forms, describe your worst day, not your best - there are no prizes for being brave.
Make sure you have plenty of things to do that can be done sitting down: books, DVDs, music, drawing - whatever you are interested in. One of our patients made a ship in a bottle, several Lego spacecraft and a life-size puppy out of card.
Cleaning pin sites
Keep those pin sites clean. You do not want an infection. If you really cannot do it properly, then Boots sell an antiseptic wound wash spray that will help (particularly the hard-to-reach parts). Savlon makes one too but it is rather sticky.
Getting clothes over a frame fitted to your leg or foot can be impossible. Skirts and dresses for women and girls do not have to be altered, but trousers do. Buy trousers with elasticated or draw string waists, cut the leg seam and use iron-on Velcro or a full-length zip.
If you don’t fancy replacing the seams of your trousers - wear a kilt. Try ebay from £20 or make your own sarong - don’t be scared, boys! This is far more attractive than a split shellsuit.
Unless you fancy the traditional Scottish style of kilt-wearing, you are unlikely to be able to escape Velcro altogether. You will also need to cut the seams of your underwear and replace with iron-on Velcro.
The amount and type of exercise you do should be guided by your consultant or physiotherapist. For instance some patients are not allowed to bear weight through their affected limb, while others can.
You can get used Exogen machines on US ebay ($50-200 plus $50 postage. Even with the weakening Pound, this is much cheaper than in the UK). Just ask the seller to press the middle status button four times to reveal how many times it has been used. (The batteries should last for at least 250 treatments, and can go to well over 300.)
Long-range pincers (Lakeland, Boots, disability aid shops) are a lifeline when you are immobilised.
Carrying a hot drink while walking with crutches is much easier and safer if you cover the top with cling-film to stop it spilling.
Get a weekly pillbox from the chemist – this is much easier to manage than a bagful of bottles and blister packs, and it will help keep track of what you’ve taken.
Make yourself a chart for your exercises - sometimes it will be hard to remember whether you have done them or not, and ticking them off is very satisfying.
Get a trough-shaped pillow to stop your frame rolling about (from Lidl, John Lewis, House of Fraser, etc.)
Swelling may be a problem for lower limbs - tilt your bed up on a couple of bricks.
You will also find a great variety of tips and practical advice on the website of one of our patients. Visit www.ilizarov.org.uk
Share your tips
If you have any tips you would like to share, then please get in touch using the Comment box on Contact us