My tips – which might or might not work for you
Having had polio, I was used to thinking about possible reasons for pain attacks, and sorted out the following; often worked for me, but there is NO guarantee they will work for you, so make sure you discuss them with your medical staff.
Electric under-blanket: at the end of the day my joints are often throbbing, so I lie on the warm under-blanket and this is incredibly soothing. Advantage is that it turns itself off automatically so no danger of over-heating.
Cramps – if you get these, my pain consultant tried everything, and finally came up with Quinine BIsulphate (not Quinine SUlphate). These tablets work for me – but may not work for everyone, and you have to have them on prescription (don’t buy them off internet sites as you don’t know what you are getting)
Lipikar Baume – I am very cost-conscious, so if friends give me lovely skin products, I use them (unless they bring me out in a rash). Having just had a birthday, I’ve got lots of smellies, but with latest hot weather found my skin was breaking out and flaking, so it was slap on the Skin Balm to stop itching and restore skin.
Flexitol, the wonder ointment that repairs cracks in our cancer-hit feet, has recently been withdrawn in some areas, but my delightful GP, foreseeing what was happening, suddenly sent me six months supply with my monthly prescriptions; he must have cleared out his shelves for my benefit before the NHS could take it back! Howevr, a friend who was refused this three months ago, automatically added it to her latest request – and she got it. So worth asking again.
Transport
An Ambulance driver gave me a tip for when I phoned to request this. You would think your GP’s letter should be enough – but No. Hospital Transport will take you through their own assessment test over the phone; when you come to “will you be requiring a wheelchair?” this is the key question. Always say YES. Say you don’t need the Ambulance’s wheelchair and are assessed as capable of walking to the nearest bus stop (however many miles away) and hop on and off buses, tubes and trains!
Helplines and websites
Yes, Helpline staff are sympathetic, BUT they are constrained by what is advised by the NHS. They are really sympathetic, but can’t tell you how to access what you should have, so it will be up to you to search for what you need. This is the time to go onto official US websites (see Category on right); their information is easy to understand and full of practical, sensible advice. e.g. my blood pressure was sky high – ASCO’s advice on neuropathy said if I had this, high blood pressure was often a symptom. So I took a print-out to my cancer hospital – no interest. BUT – the wonderful consultant at the Royal Brompton immediately grasped what the Americans were advising, and sorted me out. This is now standard practice in the NHS – but it took them ages to wake up to reality.
My tips – which might or might not work for you
Having had polio, I was used to thinking about possible reasons for attacks, and sorted out the following; often worked for me, but there is NO guarantee they will work for you, so make sure you discuss them with your medical staff.
Electric under-blanket: at the end of the day my joints are often throbbing, so I lie on the warm under-blanket and this is incredibly soothing. Advantage is that it turns itself off automatically so no danger of over-heating.
Lipikar Baume – I am very cost-conscious, so if friends give me lovely skin products, I use them (unless they bring me out in a rash). Having just had a birthday, I’ve got lots of smellies, but with latest hot weather found my skin was breaking out and flaking, so it was slap on the Lipikar Skin Balm to stop itching and restore skin.
Cramps – if you get these, my pain consultant tried everything, and finally came up with Quinine BIsulphate (not Quinine SUlphate). These tablets work for me – but may not work for everyone, and you have to have them on prescription (don’t buy them off internet sites as you don’t know what you are getting)
So good luck. Get your fighting gloves, boots and everything else on – you will need them!
