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 clear. 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 make 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.
How to alter trousers
Denim alteration, by Adrian Heathfield
Being able to wear near normal, albeit adapted, clothes is important for patients. Here Adrian Heathfield explains how he adapts jeans to wear over his frame.
You will need:
-Pair of jeans or trousers
-Piece of material
-A zip that splits at the bottom
After you have split the seam make sure you can get the frame through the gap before you start sewing. (pic)
You will probably need to split the jeans all the way up.
You will need to know how wide your jeans are. Measure the jeans at the point where the top of the frame will be. (pic)
You can buy denim for about £4 per square metre which will be enough to do about three or four pairs. It is better to use lightweight denim as it makes sewing easier, whether you are using a machine or sewing by hand. (pic)
Measure the frame at its widest point and add another 5cm. Measure the length of the frame and add 10cm. It might seam (stet) like common sense but don’t forget the half pins stick out a long way. (pic)
Mark the denim on the reverse in a long v using the two measurements. When cutting make sure to cut outside the lines as it is always better for them to be too big, than too small. (pic)
This piece of denim is now sewn to one of the jeans seams. (pic)
Hold the edge of your jeans and the piece of denim back to back so the inside is showing on both sides. (pic)
Keeping the two edges in line, sew together. (pic)
Once done turn the jeans back and you shouldn’t be able to see the stitching. (pic)
Then sew the zip to the back edge of both seams. (pic)
It should now look like this. (pic)
Split seam (pic)
Cut a long V in the new fabric (pic)
Sew together (pic)
Sew in zip (pic)
And if all this is too much like hard work or you don’t have Adrian’s sewing skills, you can get very useful zippable tracksuit bottoms from Next (Canterbury Black Ugly Pants, sizes S to XXL, and Canterbury Blue Ugly Pants for children, sizes 8 to 14).