Restless

Over the past few days I’ve started to feel restless and ask, “Is what I am doing, what I am supposed to be doing?” I studied to be a Counsellor and I am not using those skills to help people. Although, I do believe I can help people where I am anyway. I am also wondering if I can do more to rehabilitate myself and become more independent. I don’t think I have accomplished much since my operation. I have just become more comfortable. I still need everything done for me that I needed doing before.

I have just finished reading “Lost on Earth” by Steve Crombie and I think this book has really pushed my buttons about where I am at. He chose to travel around the world on a motorbike. I am always talking about travelling to Europe but I don’t seem to go anywhere.

How do I move forward? What next steps can I make?

On Thursday I am going to have a series of tests and then have my device turned ‘off’ or ‘on’. How am I going to cope with this?

I think I am feeling really tired and well overdue for a holiday!

- Martha

Calm Again

I’ve had a rather calm week where nothing big has come up - which is really good. I have been stressed and exhausted over the past couple of weeks though because on Saturday a cold sore popped up on my face.

I have again found peace in regards to my device. I am comfortable again even if it is induced by pain killers. I still think I am turned on, although perhaps not set to maximum potential. I’ll just have to wait and see.

Andrew and I have booked a holiday to Cairns – really looking forward to it. We haven’t been on a holiday for over a year. I just want to relax in the sun and do nothing, not even read! [Reading has become a big part of my job]

I bumped into our local MP on voting day and he remembered me from a function we attended in October last year. He even recalled that I spoke about DBS – WOW! What a memory. I was very impressed!

- Martha

Change in the Rules

So, I was so looking forward to 2nd September, where I would be told if my device has been ‘on’ or ‘off’ and I could get on with life adjusting it here and there to get it going perfectly for me.

Wrong!

THE RULES HAVE BEEN CHANGED!!!

The doctor rang and asked if I would mind going another three months in the trial switched to the opposite. So, if I have been ‘on’, then I would be ‘off’ and vis versa. What!!! The suspense is killing me. My head is blah. I don’t know what is happening to my body and I am soooo confused.

The only consolation is: If it gets too hard for me I can pull out of the trial when I’ve had enough.

Life sure is hard!

- Martha

Pain Management

On Friday I went to my GP to get a script renewed. While there she caught me unaware by knowing about the pain I was experiencing. She found out about it through a letter she received from my surgeon. My GP would not let the matter drop. She put me on pain medication. I have been a bit hesitant to take anything as I believe that sometimes you can work through pain or learn to live with it. I have started taking it and it has made a world of difference. I am my old self again and I can do anything I want physically without this pain in my neck slowing me down or stopping me.

Another source of pain was being around 4 new babies for the afternoon. My heart was very sore by the end of the time. I felt very inadequate that I couldn’t be part of this ‘baby club’. I am aware that this pain resurfaces every now and then and I know it is a normal feeling. I have now learnt to be kind to myself and focus on the things that make me happy that I do have and this helps me get over my baby blues quicker. A good sleep helps too!

I find out if my device is ‘on’ or ‘off’ on 2nd September after a gruelling 3 lots of appointments that are scheduled all on the same day.

- Martha

Better

My body has finally settled down again and I am not feeling as much pain. I think it just took me a week and a half to recover from the wedding I went to 2 weeks ago.

I went to see the surgeon last Monday and he felt I needed my device re-adjusted as well. So, I did make an appointment to see the doctor with all the power to adjust my brain and I also asked that he ring me as I had a feeling he wouldn’t want to see me before the 3 months were up. My instincts were right. Even though the surgeon and my neurologist agreed that my device needed tweaking, the tweaker can’t see me until after three months otherwise it will compromise the trial.

The other option was to look at pain management options – I am not one to take lots of medication. I did make an appointment to see my neurologist, but then I cancelled it as the pain reduced. (I think I scared the pain away by threatening to see the doctor – lol!)

Its amazing how our body tells us when we need rest, and we, being intelligent human beings that we are seem to think we know better. When will I ever learn?

Yesterday I had another birthday which was a very special day with my family in my house with the puppies. Since my last birthday I have Pupa and Bronte – two joys in my life!

- Martha

Re-learning with no expectations!

What a tough week! My muscles have decided they have had enough and don’t want to participate anymore. This has happened just as I’ve decided to get on with life and dive into lots of work.

I am in shock I think??? Is this normal? Was I naive about this operation? How can I help myself?

The benefits are still there if I can see them through the pain that is racking my body. My left arm and leg feel strangled and there is an adrenaline rush coursing through my whole body making it feel like hot liquid sluicing (really wanted to use that word in a sentence) around.

The only thing that makes my body feel okay is if I do nothing. This is not an option as the first paragraph tells you because of the decision I’ve made.

The doctor seems to think I need my device adjusted which I so agree with and I also need to let my muscles re-learn things. This is big! At the age of 36 we normally know our strengths and limitations – now I don’t know anymore! So, wow!

I might as well wipe the slate clean and start again – no expectations!

- Martha

Weekend Away

This weekend Andrew & I attended John’s, Andrew’s brother’s wedding. It was my first time away since my operation. The weekend went very well and a lot of people noticed a change in me which is positive.

We had a family dinner on the Friday night which I was comfortable at. The wedding was on Saturday. I actually sat still in the church and didn’t have any panic moments that I might move too much – it was great! The reception was easy also. I had to leave at 10pm though as I was feeling a lot of fatigue and I started to feel anxious. On Sunday we had breakfast with Uncle Pete, Aunty Viv, James, Jess & Sime. It was fun.

We then came home, had a nap and then went and picked up Pupa and Bronte who had had a big weekend also.

It was great to feel the changes while we were away. The fatigue however, was frustrating. I wonder when that will go away?

- Martha