Re: Coping and Support

[Guest guest]

Thanks for this Bruce. I think it's far too easy to not look after yourself as you just 'get on' with things. These are very important points. Especially to rest before you're tired, and that's something I'm guilty of not doing.

Love Ze xx>> > I was just reading on Mayo Clinic a section on Polymyositis with> information on Coping and Support. I thought it was excellent and didn't> just apply to an autoimmune disease but to our PF or any other disease.> So, here it is:> Coping and support> Living with a chronic autoimmune disease can make you wonder at times> whether you're up to the challenge. Though it isn't always easy, you're> tougher than you think. To help you cope, try supplementing your medical> care with the following suggestions:> > * Know your illness. Read all you can about polymyositis and other> muscle and autoimmune disorders. Attend lectures and talk to people who> have a similar condition. Don't be afraid to ask your doctor any> questions concerning your illness, diagnosis or treatment plan. * Be> a part of your medical team. Consider yourself a member of your medical> team in the fight against your disease. Following the treatment plan> that you agreed to is vital. Keep your doctor updated on any new signs> or symptoms you may experience. Regularly perform the physical exercises> prescribed for you. * Rest before you get tired. Don't wait until> you're exhausted to rest. This will only set you back further as your> body tries to recuperate. Learning to pace yourself can help you> maintain a consistent level of energy, accomplish just as much and feel> better emotionally. Learn to say no effectively and ask for help when> you need it. * Use electric appliances and power tools. Save your> energy by using power appliances, such as battery-operated toothbrushes,> electric can openers and power screwdrivers. * Acknowledge your> emotions. Denial, anger and frustration are normal feelings when you> must deal with an illness. Things don't seem normal or fair and likely> seem out of your control. Feelings of fear and isolation are common, so> stay close to your family and friends. Try to maintain your daily> routine as best you can and don't neglect doing those things you enjoy.> Many people find support groups to be a helpful resource.>