Forgetting the Spades I Haven’t Got

Living with a chronic illness, or two, means that you choose to accept your condition and then do the best you can to cope with the bad times (which can fill up the landscape) and deal with the good times.

A friend of mine pointed out that the good times have to be dealt with. Occasionally, you will wake up relatively pain free. If you deal with depression as a side dish to your chronic illness, there will be a day when you wake up with a somewhat clear head and loads of energy. Then what? My MO is to panic and try to fit in as much as possible into my life before the clouds come crashing down. This method brings on the crash sooner and harder. Which is what my friend was pointing at.

I am slowly teaching myself to accept the bad times, deal with the pain, take care of myself physically as well as emotionally, ask for help when I need it, be less negative, hope that fellow humans have enough goodwill, excel at my work even when my health kicks me in the gut, be kind and generous to others…

What is taking me longer to learn is how to pace myself when the good times come. I want to love with everything I have, I want to live with everything I’ve got and I want to dance, sing, swim, play, laugh… And when I think I can, even for a little while, I want to do it all… then I am afraid it will go away too soon.

I am going to have to learn to devour life with the spoons I’ve got, and not worry about the spades I haven’t got.

How to Deal with the Spoons you Get:

If you have Lupus, you will have moments of sadness – just like everyone else. But your sadness and lack of vigour may be compounded and lengthened by pain, medication that change your brain chemistry or even by Lupus affecting your brain chemistry. So yes, you will likely face depression. How can you cope?

1. Talk to your doctor if you feel depressed. Your doctor can help you figure out if you need adjustment for your meds or need to see a mental health care practitioner.

2. After initial diagnosis, you will go through the stages of grief – denial, anger, bargaining, depression before acceptance. Try to actively reach acceptance of your diagnosis as this will help you start to take the right measures to take good care of yourself. If you are in denial or still bargaining, you will likely not take your meds properly, you will not be able to see how to adjust your life positively. If you are angry you will lash out at people who care. So talk to someone about your feelings.

3. Talk to yourself. Use positive self talk and avoid negative self talk. This is a tough one as you will have to actively look for things to be grateful for. Making adjustments to your life will help. Understanding that adjustments from the normal way of doing things does not make you less valuable is key. For example, I can no longer handle a daily commute to work and there will be times when I cannot work for hours. Rather than give up and give in, I decided to negotiate for alternative terms of work that allow me to work from the relative safety of my home at relatively flexible hours.

4. Surround yourself with supportive people. Probably one of the first things my doctor told me when I got my diagnosis is that having negative & difficult people in your life will kill a lupus survivor sooner than the disease itself. It can be hard to cut out those parts of your life that make it harder for you to cope, but it is absolutely necessary. Don’t apologise for wanting to have a positive environment.

5. Take one day at a time. Don’t worry about all the things you have to do. Be organised and then do what you can when you can.

6. Watch your moods closely. Do you feel worse after eating certain foods or doing certain things? When do you get highs and when do lows hit you? Keep a journal so you can work out the patterns. Then determine to change the routines that make you go into depression.

7. Keep a list of ways to feel better. I can’t go to the gym every day, but 45 minutes of exercise every other day keeps my moods stable. Reading certain things lift my moods. I am fortunate that I can still keep pets and spending time with my dog makes me feel better even in a down in the dumps day. I still have no idea how to deal with human beings as outcomes can be unpredictable, but I am generally aware of which type of human beings make my day better.

8. Connect with your spirituality. This means a lot of things for different people. It can mean anything from prayer to writing, drawing, photography, helping those in need, really anything that makes you appreciate life and the universe. For me, this takes on a deeply personal effort to maintain certain routines that are essential to my spiritual well being.

9. Lastly, stay active. When in pain, you don’t want to or are afraid to move. But activity makes you stronger, provides a circulation of endorphins and lifts your spirit. Identify a form of exercise that works best for you. Don’t overdo, but don’t freeze up in fear either.

So there, let’s go: Eat life with the biggest spoons we’ve got, forget the spades we haven’t got!


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