Shake, rattle and roll!!!!

Shake,  Rattle and Roll!

I really don't like to moan about my aches and pains and try not to bother anyone with my tales of pain and fatigue........  but there are days when I just feel like I am not sure I can do this for the rest of my life!  I am now taking so many pills that I feel as though you could hear me coming from a mile away as I "shake, rattle and roll!" down the pathways.

I am sure that I am not taking as many pills as some other people, but for me this is a lot!  I have been sick my whole life and so should be used to taking medication by now (after 44 years!)  but I still find it hard to swallow pills and feel quite ill after taking even pain killers.

To top it all off, I have just changed GP's as we moved a year ago (and only just got the courage to change GP's) and the new senior doctor is questioning why I am taking certain meds.  Here is what I am taking every day:

am :  
1 x Fexafendine :  urticaria and hay fever
1 x sertraline : depression
1 x hydroxichloroquinne :  trial for arthritis pain
2 x co-cododamol : (4 hourly) in advance to cope with the daily pain of arthritis
1 x Limecycline : to keep my rosacea at bay
2 x puffs seretide : asthma steroid
2 x puffs salbutamol : asthma reliever

pm:
1 x montelukast :  to help me sleep through the night without waking up wheezing
1 x hydroxichloroquinne :  trial for arthritis pain
2 x co-cododamol : to help me sleep through the pain at night


I am wrapping my fingers in coflex now to protect them from bumps and also the strapping is helping with the pain.  I have also been given a brace for my ring finger as my finger is bending at quite a bad angle now so the hand therapist is trying to straighten out my bone (which is extremely painful and I cannot wear it for too long).

These bulges are called Heberden's Nodes and are extremely painful and not very pretty to look at either.

What is a hebeden's node?



I have also been given a super sexy support for my hand and to support my left thumb as the pain is quite bad and I am starting to lose my grip on things so am finding that I am dropping things on a regular basis.  I am so grateful to my family as they are always carrying things for me and helping with so many different things around the house, shopping etc.  

To my hubby, he would carry me around if I needed him to (and may need to later on in my life),  he has unlimited patience with me when I have my down days and become the wicked witch of the west!  I could not cope without him.

To my daughter Steph,  she always asks with interest how I am doing and does everything in her power to help me with anything I need,  she has a little one and as a single mom her time is very precious,  so the time I am priveleged to have with her is very special.

To my son Garry who is always on hand to carry my shopping and lift things for me around the house and does it with a smile on his face even when he has a football injury of his own.  I am so grateful that he is around when I need him.  I am grateful to him listening to my moans too when I have a bad day.

To my grand-chicken Addison who lights up my life with his smile and energy.  I am so glad that I can still do some things with him like dancing and painting etc,  I need to enjoy this while I can.

To my little sister Sarah,  who lives further away but obviously thinks of me a lot.  Constantly sending me messages to see how I am feeling.  I am grateful for everything we have been through together in the last 10 years that have brought us so much closer together and understand the extent of her love for me because of it all.

so nearly time for bed and some pills to take...........  At least I get a full nights sleep because of the tablets I take at night for which I am really grateful as it is a lot easier to face the next day of pain when you body has rested the night before.

Accepting my limits!

The "young me" was active, sporty, energetic, creative, musical, sociable, insecure, negative, independent............  The "old me" (the one with arthritis) is slow, tired, aching, throbbing, clumsy, forgetful, dependent on others, positive, mature..........

Sometimes is it is really hard to accept that I won't be able to to do the things I used to be able to do.  I still find myself getting frustrated that I cannot clean the house in one go,  that I have to take breaks on a regular basis, that I cannot walk as much as I want to.  But I understand that this is who I am now.  I found a great article on the "Not to do list" (see below and it really made a whole lot of sense to me).

A Not-To-Do List for the Chronically Ill

Items that belong on a not-to-do list for those with chronic pain or illness.

Published on August 2, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Pierre Bonnard (1906)

I love To-Do lists. I depended on them when I was working outside the home. I’ve depended them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.
A few weeks ago, I realized I could benefit from a Not-To-Do list that would remind me of my limitations—limitations I often ignore either because I’m in denial or because I want to please others. Unfortunately, I always pay the price physically, and that’s not good for me mentally either.
So here’s a Not-To-Do list for those who live day-to-day withchronic pain or illness (or, as is often the case, both).

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1. DO NOT say “yes” to an activity if your body is saying “no.”
I’ve ignored this Not-To-Do so many times that I’ve lost count. It can be so hard to turn down an activity that makes me feel more like a healthy person. When I break this rule, it’s as if I’m a child again, shouting at myparents: “Look at me! I can ride a bike with one hand!”
My most recent “bout” with ignoring my body began innocently enough about a year ago. Two friends were kind enough to coach me in learning Qigong. I learned movements with wonderful names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.
For the first few months, I ignored the “one leg” instruction. I stood on two legs and only squatted down partway. I was listening to my body. But one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and, for several months afterwards, I was limping and had knee pain to add to my daily symptoms. Why did I ignore my body? I was frustrated by my limitations and so I rebelled. Lesson learned though: DO NOT say “yes” to an activity if your body is saying “no.”
2. DO NOT call yourself names or otherwise speak unkindly to yourself.
Here’s an anecdote from my book How to Be Sick:

At a retreat in the 1990s, teacher Mary Orr told this story:
She was in the middle of a harried day in which she had too much to do and too little time in which to do it. At one point, while in her car, she realized she was talking to herself in a way she would never talk to others. I don’t remember her exact words, but I remember their impact. They resonated with me because of their similarity to the way I often talked to myself:
“How stupid of me to take this route; it’s always full of traffic.”
“I’m so dumb, I forgot to bring my notebook.”
“You clumsy idiot—you dropped your drink again.”

Mary’s story was a wake-up call for me. I’d never call a friend “dumb” or “stupid” or an “idiot.” But I’d called myself those names. The Buddha said: “If you search the whole world over, you will find no one dearer than yourself.” I decided to take his words to heart and so I began to treat myself as if I were a dear friend. The result? I felt so much better, as if I’d shed a tremendous burden—the burden of self-judgment.
A good test for whether you’re treating yourself kindly is to ask if you would speak or act that way toward a loved one in need. If not, don’t speak or act that way toward yourself. It’s hard enough being sick and in pain. There’s never a good reason to add negative self-talk into the mix.
3. DO NOT try a treatment just because someone said it cured him or her.
I have a theory about many unconventional treatments. Depending on a person’s condition, it’s possible to spontaneously recover from an ongoing illness. Some people do. When that happens, they attribute their recovery to whatever treatment they happened to be undergoing at the time, no matter how unconventional it was. The reason I think my theory is credible is that I suspect I’d do the same thing were I to wake up not sick tomorrow morning.
So don’t assume that any seemingly magic cure is for you. Do your research, consult with those whom you trust, consider your pocketbook. I like to check my tendency to jump at treatments (I get emails almost every day telling me to try this or try that), by reflecting on how, if this really were a cure for my dysfunctional immune system, it’s highly likely it would be all over the internet on sites I’ve come to trust.
4. DO NOT wait until the last minute to get ready for something.
Waiting too long is an invitation for a surge in adrenaline to get you through. If you’re like me, that draining sensation of “coming down” off adrenaline is the first sign of a crash. When getting ready (showering and dressing for an appointment, picking up the house for visitors) try doubling the amount of time you think it will take.
5. DO NOT strive for a spotless living environment.
Corollary: DO NOT feel bad or criticize yourself for not striving for spotlessness. That would be engaging in unkind self-talk and it’s already on your Not-To-Do list.
6. DO NOT “shop ‘til you drop.”
That’s for healthy people.
7. DO NOT wear uncomfortable clothes.
Your body is already struggling. Don’t subject it to restrictive panty hose, tight jeans, high heels (of if you’re a man, whatever the male equivalent would be). Exception: If there’s a special occasion that will give you a mental lift if you break this rule, break it. But remember your reasons for breaking it, so that you don’t slip into negative self-judgment if those too-tight clothes start to chafe or those fancy-looking shoes begin to hurt.
8. DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they’d be as much fun today.
Even if you aren’t sick or in pain, life is in constant flux. Among the healthy, relationships change, job conditions change, bodies change. I’m going to write about this soon in a piece I’ve tentatively titled, “Do You Suffer from ‘Good Old Days Syndrome’?”
What would you put on your Not-To-Do list? I’m looking for more items to put on mine, so please share your thoughts with us.
© 2013 Toni Bernhard www.tonibernhard.com  
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow  .
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers