Vintage Butterfly

Aaaahh new papers – you can’t get to them quick enough to start creating 🙂

Pure Joy – Despite…

I have had a really lovely Good Friday. The weather was absolutely gorgeous for our annual Good Friday picnic in which I get together with my beautiful cousin, her partner and my very good friends and our kids. One year we went to the Botanical Gardens which is in the heart of Brisbane but the last 2 years it has been organised by my friend Kassy and very close to where I live as driving is a problem for me. I drive short distances around home mainly but of course with the different tablets I take for pain some days I am unable to drive. The poor car sits in the garage more than gets driven…and when it comes around to pay the registration I curse it for the days that it sits there.

The weather was a beautiful warm (but not “stinking hot”) we had a great picnic table under a big tree with a great playground for my friends Kassy and Jame’s 2 young gorgeous sons. A lovely picnic lunch and a chance to catch up with the friends I don’t see so often these days. It’s crazy when you now have all the time in the world that you can’t carry out all the things you said you would do when you no longer worked..I was only saying today I imagined that I would raise Guide Dog Puppies or Foster dogs until they had a home. I also said I would learn floristry – perhaps this may be something that I can achieve, not so much on the puppies though.

After a year and a half of living this disabled life, I have really struggled with feeling joy. Real joy. I practice “Mindfulness” every day as much as I can and a big part of Mindfulness is being exactly in the present and using all of your senses to be present fully. I always stop and enjoy my dog’s moment when we play ball for 10 minutes or so. I try to pull myself back to the moment, watch the pure joy that Domino is feeling because for him, life does not get better than “ball”(as you may have seen in my earlier post on Happiness). During “ball” I really try and stay connected with Dom and enjoy his joy and I do. I also feel Happiness when I am spending time with Jake and he is doing something crazy to make me laugh. I am not a morose mess of depression. I laugh and act as I did before to some degree and I think to strangers they would never know the difference. In the days I spend alone I am still busy with exercising, stretches, meditation, making cards, spending 4 hours to prepare a meal and I do have moments of joy. This new life means that I have to try extra hard to “blow up” the joy I might have – it’s hard work and elusive.

The breakthrough came last week in which I had showered myself and it was painful, and I put my tens machine and was driving to a friends scapbooking store to have a look around. I did have some money to spend (something that I have not had for a year and a half) and on my way there I was feeling Happiness. I wasn’t trying hard – it was a great feeling. It did last a few hours, I spent some money which in turn I will make cards out of which will also give me joy. Pure joy that for a small amount of time I had achieved what I had been so tightly trying to grasp. I was living “Along Side” of my pain. I was feeling pure joy – despite.

So that’s what it is and I have now met people through a Chronic Pain Support Group I have just started going to that appear to have built a new life – despite.

Maybe I have found the role models I have been desperately looking for 🙂

I really love this story written by Jen, her partner has CRPS and this gives a fresh look on how tough this illness is for our loved ones.

Vintage Girl

I had so much fun with this card, I probably played with it for about 3hours but I am happy with it and it brings me joy while I am doing it which is the most important thing with Chronic Pain “Have some Fun Time”

Very Inspiring Blogger and Versatile Blogger Awards

I am so very sorry I have been unwell for just over a week and hardly on the computer to be able to thank 3 wonderful bloggers for the awards they have nominated me for.

Yay yay yay! My 2nd and 3rd Very Inspiring Blogger award – thank you very much Shaun at http://prayingforoneday.wordpress.com who writes about his very real feelings but has a fabulous sense of humour to boot! Patrick at Perspectives http://pifuk67.wordpress.com writes a really well written blog about life with his father and Dementia. A very real and honest blog.

I have also been nominated for the Versatile Blogger Award 2013 by http://stinasjourney.wordpress.com Thanks so much Christina again very much appreciated. I really loved reading the facts about you and that you make your bed rain, hail or shine no matter sick you are…that really is amazing!

For me to be such a “Light Weight” (newbie) in a very big pond it really is such a wonderful feeling to think that I have a platform to share my story good bad and ugly in hopes that we can all draw from each other in times of need.

The rules of accepting this award are as below:

1. Display the award logo on your blog.
2. Link back to the person who nominated you.
3. State 7 things about yourself.
4. Nominate 15 other bloggers for this award and link to them.
5. Notify those bloggers of the nomination and the award’s requirements.

Seven things about myself

1. In Grade 2 I used to pretend I was “The Fonz” despite being a girl. I remember walking into my classroom with the swagger and “EEEEEHHHHHH” all my friends on the way to my seat. LOL!

2. I am now the proud owner of a Nana Trolley much to one of my closest friends disgust. I bought it to help me carry my gear to the Hydrotherapy pool but think I may have found many uses including perhaps shopping with that very friend with it.

3. As a teenager my life revolved around roller skating, I loved it and also dream some nights that I still can.

4. Before my son was born we had settled on the name Melina if he was a girl until a girlfriend who was a nurse told us the “Melina” was a term they used for a sticky black pooh.

5. I have smelly candles burning in the house most days and believe that it improves my mood having such a wonderful scent in the house.

6. Music makes my world go around. I own over 600 CD’s and can still find days where there is nothing I want to listen to.

7. My favourite colour is purple.

3. My dog Domino our Beagle Border Collie Cross is a very much loved family member.

I would like to nominate the below Very Inspiring Bloggers for this award for such wonderful writings and the brave choice to write as some of them do.

1. http://pifuk67.wordpress.com/ Patrick Walker’s very brave blog about life with his Dad and his Dementia.

2. http://throughthehealinglens.com/ Robyn Lee and a really inspirational blog, please read her “About” page.

3. http://sethsnap.com/ Wonderful photos. I just love great photography, I find it beautifully uplifting.

4. http://cindyknoke.com/ Truly beautiful photography – lovely work Cindy

5. http://greenhornphotos.com/ Again being able to capture such beauty through the lens

6. http://mybeautfulthings.wordpress.com/ what a wonderful way to start the day.

7. http://knockedoverbyafeather.wordpress.com/2013/03/24/one/ Beating Depression with Humour.

Inspirational Story by Janine Shepherd

I really wanted to share this absolutely inspirational story by former Australian Olympian Janine Shepherd and the adversities she has faced. I just got so much from her story on Ted TV – Janine Shepherd “A broken body isn’t a broken person”. Completely inspirational and told in such a really interesting way, I can’t share this enough. I hope you enjoy….

 

The human spiri…

The human spirit is stronger than anything that can happen to it. ~C.C. Scott

Alone and Afraid…

Alone and afraid…these two words were written in a CRPS Facebook message and these 2 words have stayed with me all day.

I guess I really want to try and put my finger on what I feel on a daily basis and that is exacactly it – Alone and Afaid.

Please don’t get me wrong I have an invaluable support team of wonderful family members and wonderful wonderful friends all of whom I cannot get by without. I also know that I am luckier than a lot of other people that don’t have such great people around them. I also hear of horror stories of losing friendships over this illness. I pray that this will never happen and I also pray that if I become to much of a burden or a depressive mess that “My Girls” (you know who you are!) will be brave enough to tell me so that I can give myself an attitude adjustment.

I do spend an awful lot of time alone and once I probably would have spent too much time in dissecting and dissecting my thoughts over and over but for some reason I think I have realised that too much time on idle hands could be a problem. I stay busy, my physio exercises, meditation, exercise, hydrotherapy, all day food preparation for dinner, card making and small amount of household chores really do take up most of my days. The days that my personal carer doesn’t come to shower me, I do try to do without a shower if I am not leaving the house. The shower is just such terrible terrible pain and once you have done it, the pain stays that way all day and progressively gets worse on some days too. The whole idea of the personal carer is that they do all the work and the main reason is that they continue to talk to me during the shower which diverts my brain from the pain. It works most days unless like on Wednesday (with my lovely regular lady on holidays this week) they bring a trainee to shower me. This caused a huge amount of stress therefore causing a huge amount of pain. I did hear the trainee say she would be back on Monday to clean (but thought she would be coming with my lovely lady) but today she turned up on her own. She isn’t far out of school, scared, and completely inexperienced with no people skills what so ever. I turned her away, apologised profusely said that it was my fault not hers (which is completely true) but she still seemed to have lost her voice. Unfortunately if they continue to send inexperienced people – I can cause the same amount of pain doing it myself.

Having the personal carer come in 3 times a week really has given me an awful amount of “Piece of Mind” and I can’t quite put my finger on it. With my lovely lady she is just so intelligent and when she sees me in terrible pain, she just takes care of the situation. She leads me back to bed, asks me if I want a cuppa and a sandwich and she just does it. No questions “Where is it…I can’t find it…Did you say you want??? Oh it is such bliss when you are not completely sure of your own name by this stage..let alone making decisions. Piece of Mind.

The “Alone” comes in with my condition I guess. CRPS. It is a rare disease – it is difficult to find others in the same boat, that are going through similar problems. I have found a wonderful group of really supportive people on the RSD Oz forum and they have been a tower of strength for me and my million questions. When the computer is shutdown and you couldn’t access it even if you wanted to because of the pain is when you feel alone. Of course that is before it completely takes over “Mindwipes” you. No amount of friends and family can help you with that feeling and I know that they wish they could. I think for me it becomes more prominent also if I have had a rare good day and socialised with others, perhaps a party with people that haven’t seen you for a while – I know they are feeling awkward to some extent with me but when I come home I feel like I just have nothing in common with anyone anymore. More than happy to talk about you but I don’t even know where to begin if you want to talk about me.

Afraid. All day. Everyday. At least once a week I am presented with something new and it scares me – I don’t know what it is and I don’t know what it means. Two weeks ago I started losing a lot of feeling in my good hand the right one. Pins and needles most of the day. For months when I walk my legs are numb, if I walk for a bit I am just trying to will one in foot in front of the other but I can’t feel them. Last week there was a rash behind my left knee (it’s still there) and yesterday I have chicken pox type of blisters on my left leg and right leg. I have had these blisters on my bad hand before but why are there so many and on both legs. What does it mean? I don’t deal with change when it comes down to this condition. I am afraid of it and I fully understand what it “Could” do to me in the future and if I allow those feelings to come up out of the very large box I have them stuffed in to – I am very very afraid and I don’t know how to conquer that fear and this fear make me feel so very alone.

CRPS Definition

CRPS -The pain of having the blood drained from your veins and replaced with acid accompanied by the sharpness of a many new broken bones while someone holds your limb constantly on the stove element while they yell in your face causing your limb to turn hairy, purple or red and swell. Did I miss something? I guess that’s why it is rated the highest pain on the McGill Pain Index. No wonder I black out when it gets to that stage.
Don’t even get me started on the side effects of the relatively useless drugs 🙂

 

Never Give Up…