Archive for the Week 14: Coping Category

Masquerade of Words up catch up blog, probably more of a ramble…. By Jackie

Posted in The Blogs By Jackie, Week 14: Coping on February 9, 2012 by Cookie Has A.S.
Trying to think where to start, Coping: coping on many levels.
There is the practical stuff, learning how to do everyday things by using other parts of your body for strength, eg when vacuuming using an upright machine, we usually push from our backs, but by using the thighs to push with, is much easier on our backs.
Always bend down by bending the knees (unlike me who bent down to pick up a bit of fluff while vacuuming, and didn’t use my knees and simply heard the crack as my back broke yet again)!
When making a bed always use the thighs as much as possible, to push the bed for example.
When organising your kitchen try to make sure that everything you use on a regular basis is in a cupboard you can reach easily, as you don’t want to be reaching/stretching any  more than you absolutely have to. Have ovens fitted in where you can use them with ease, and not have to hold a heavy dish and bend down to put it into the oven, or to lift out of it.
In the bathroom try to have handles you can use to hold onto while in the shower, especially good for getting out when you are all wet!!!! And a grip for getting out of a bath. You may not feel you need measures such as these yet, but the day will come when you may not find the essential, but probably find them to be useful.
Again in the kitchen think of the weight of cooking utensils, there are some fabulous cooking pots and casseroles around, but as well as being very expensive, they weight a ton, and that’s before there is any food  in them. This may seem very simplistic, but these things can be a real nuisance if you haven’t thought it through. It also really helps when you can do these things for yourself and  have to ask for help as infrequently as possible.
Then there is the whole question of how to make those around us as aware as possible to our situation. The problem, as we all know, is how to make people really understand what life is like. How one day we can be quite fine (or at least manage to appear to be!) and the next, after doing nothing ‘wrong’ we can be unable to carry on, unable to function without it being obvious to all. We try to convey to them about the nasty visitations we often get in the night, the one with the baseball bat, cricket bat,  truck…… but they find it rather difficult to comprehend. The fact that we can be totally battered, or run over by that truck!, or a shoulder just battered, or a knee, or a foot, lower back, neck, well you know the story. I keep saying that I think the basis is that most people consider illness to be something to get (catch.. whatever) it is diagnosed, treated, then you go through a period of recuperation, and Bobs your uncle! Our reality is we have lots of periods of being very unwell, eventually  it is diagnosed – usually years later – we receive treatment and then go into the occasional period of quiet. Sometimes the quiet times can last for years if you manage to get great meds organised (quiet meaning you can continue living a fairly normal life and coping) but then something comes along to stop you in your tracks, whether it’s a new place of pain, whether the meds just stop being so efficient and you need to start all over again to reassess your situation and try a new regime, whatever, but it means that their notion of us being ‘cured’ is shown yet again to be all wrong.
They seem to find it very difficult to accept there is no cure, that there is no overdoing it, doing the wrong thing for us. Yes we probably do more than we should when we can – just cause we can. It doesn’t happen often ok, so go easy on us!! But there is no guarantee doing ‘too much’’ will cause us exceptional pain, sometimes it does, sometimes it doesn’t, and you need to believe us when I say that you should try not to ‘accuse’ us if we end up paying for a full day out, a day full of housework etc. We have gone ahead and done a lot more than our normal after weighing it all up, and balancing up any possible payment against the sense of achievement we are able to enjoy now and then. To have behaved in a normal way!!! We give ourselves a row for doing too much on the various AS sites, but it is done tongue in cheek as we all understand the enjoyment of having the occasion high and low rather than never ending blandness.
Yesterday I was full of the cold feeling miserable with lots of aches etc and a bit fed up. I didn’t get up till later, didn’t have a shower and generally was just a misery, so today feeling a little better I had a lovely long hot shower, washed the hair, got dressed, even put on some red lippie just to cheer myself up. I couldn’t have done much more, but I did enough to feel the difference from the day before, and hopefully tomorrow might be even better , might even get outside!
We have to work with what we have on any given day. We will let you know, though if you are very observant you might find you can see the little signs to guide you into how to deal with us!.
I could ramble on a lot more, but my hands are grumbling now, despite my natty fingerless gloves, so I will finish now.

Is It, Simply A Matter Of Choice? By Cookie

Posted in The Blogs By Cookie, Week 14: Coping on October 10, 2011 by Cookie Has A.S.

The million dollar question today is:

How do we cope?

Is it decided by genetics?

Is it something we learn?

Why are some of us optimistic and some pessimist?

Why are some grateful and some bitter?

What makes us different, but yet the same?

What is it inside of us that determines how we cope with life,  illnesses, tragedies, death or simple every day problems?

Many of us will go through life never knowing the answer to that question, some of us will know the exact moment when we are given the answer.

For as long as I can remember, my mother had a Serenity prayer tapestry that my aunt Judy made especially for her, hanging on the kitchen wall. The sitting arrangements at the dining room table made it visible to me during our meal times. I can’t tell you how many times I read it while living at home; even now a copy of that prayer is never far from me.

It wouldn’t be until later in my life after many challenges and tragedies that I would come to truly understand the wisdom of those words, this prayer has been instrumental in teaching me how to “live” my life, giving me the strength to cope with whatever fate may bring my way.

One of the most valuable life lessons I experienced was during my youth. I met a young girl named Diana when I was young; she had been diagnosed with cancer when she was 8 years old. She had to have her leg amputated when she was 12 years old. We became best friends, inseparable.

Life was cruel to her, people were cruel to her, and cancer was cruel to her. She touched a place so deep inside of me that I was never the same. My friendship with her taught me compassion, sympathy, understanding and most of all acceptance.

There were times I had  to fight or defend myself because I was her friend. I learned people were prejudice, ignorant and superficial. My friendship with her cost me a lot but was worth more than I had lost. She taught me unconditional love and the value of a person and to find blessings in everything. She was amazing and wise beyond her years.

A few days before her death, she took a turn for the worse and it was horrible to watch. Seizures and convulsions over took her body, and my boyfriend, Ronnie ( my husband)  in his need to protect me took me away from the hospital. After threatening to jump out of the car, he took me back.

When we stepped off the elevator, her father greeted me, saying she is asking for you. I walked into that room to see my best friend close to death, smile at me with love and warmth, and when I took her hand and stood beside her, I bent down and kissed her forehead. She whispered,” you are better than morphine; I feel no pain or fear when you are near.” I had been praying for months for God to heal her, that night I asked for the serenity to accept the things I could not change.

She died the next day. I lost all faith in God and became angry and bitter. I hated those who thought my grieving was an act or that I would get over it. My heart was broken. My soul was shattered. I didn’t have the support system needed to cope with this. I didn’t have the faith to continue to live without bitterness. I hated myself for being alive.

I struggled for months trying to understand, why? I asked my preacher over and over how God could allow her to suffer and die. No answer was forthcoming. I hated the person I was becoming. I was bitter, angry, devastated and lost. No one could comfort or help me to understand.

My granny Irene, came to visit, I adored her. She taught me so many things, to crochet, quilt and do crafts. She sat beside me and asked, “How are you doing child?” I knew what she was asking, and the tears and emotion was so thick I couldn’t speak. We sat there quietly for a long time.

Finally she asked me the question, I will never forget. “Cookie, do you wish Diana had never died?” I whipped my head around so fast and stared at her as if she had grown 3 heads. I said, “You’re kidding, right?”

She stared at me long and hard and whispered no. I was so mad that she would ask such a stupid question and with hatred in my heart, not toward her, but life and everything about it. I screamed, ” YES I WISH SHE HAD NEVER DIED!”

She waited for my pain to ease and quietly said to me, “That’s  a shame child, because that means you would’ve never known her.”

Now that caught my attention.

I said, “What do you mean?”

Then she said the words that would forever change my life.

” For whatever reason or purpose Diana had, she was only meant to live sixteen years. Everyone will leave this earth. Some are here longer than others, but when our time is up, it’s up, unless of course you take your own life. So in order for you not to be hurting over Diana’s death means you would’ve never had her in your life, because that was her destiny.”

I sat there in silence listening to what she was saying.

” Cookie, life is simple; there is a season for everything. If you never have sorrow you will never appreciate joy. If you change the bad things that have happened in your life and wish them away, then your life changes and if your life changes there is no guarantee that the blessings and joys you have had would be the same. Remember always good things sometimes happen to bad people and bad things sometimes happens to good people. It’s the way life is sometimes.”  She got up, kissed me on the top of my head and left me there to think.

I sat there on the back porch for many hours and then finally went inside. Later that night I made a promise to myself at the age of seventeen. That I would ask for courage and faith to help me through the hard times of my life. That I would ask for strength and guidance to change the things I would be able to.  That I would appreciate the beauty in the sunrise and in everything I see. I promised that I would do my best to never question any situation and try to turn it into something positive. I promised I wouldn’t take my blessing for granted and that I would never pray for anyone to live, that I would not question fate.

That promise has been tested over and over, in more tragedies and cruelties than most people will ever see in three lifetimes.

I often say I have the worse luck of anyone you will ever know but I am the most blessed person you will ever meet. It has been a challenge to keep that promise and it’s something that hasn’t come easily. But it’s my way of life and how I raised my daughter. Maybe it’s because of the life that I’ve been blessed with that I can feel this way. I know most would say the life I was cursed with, but I honestly don’t feel that way.

Often time’s people will ask, “Aren’t you bitter, or at least angry?” I’m always quick to say, “How can I be? I was never promised anything.” Honestly how can any of us be bitter about something we were never promised or guaranteed to have? I don’t remember reading a contract when I was born saying that I would be 5 ft 6 inches, 120 pounds, blonde hair, blue eyes and healthy till the day I died. We aren’t promised or guaranteed anything, and everything we have is a blessing.

It’s  sad to watch people waste their lives wishing things were different.

Change what you are able to change.

Accept and make the most out of what you aren’t able to change.

I watch people spend their lives, being bitter and wishing for this and that.

Never paying attention to what they have in their lives at this moment.

I have learned to cope with Ankylosing Spondylitis in the same way.

I am thankful that I didn’t just wake up this way and that it was a gradual process making it easier to adjust to over the years.

Until you make peace with who you are , you will never be content with what  you have.

How do I  cope?

It is, simply a matter of choice.