Monday, 20 August 2012

End of a decade

Don't you just hate those early mornings, when for whatever reason you wake and your mind starts racing? This morning was one of those for me. No matter how much I tried to turn off my brain and go back to sleep, it was equally determined to keep going.

I don't even know why these thoughts were in my head, maybe it was triggered by a dream or a subconscious memory. Whatever the cause, it was not going to go until I got up to put it on paper.... well on computer screen.

So what is it that makes sleep evasive? I guess you would call it a reflection of the past 10 years. Yes, as I am about to enter my fifties, I was remembering the last decade.

While my 20's were mainly full of happiness and my 30's a blur, my 40's have been full of some of my highest highs and lowest lows and greatest achievements (apart from my kids).

Ten years ago I joined an online forum with the name of emailcash (emc). This forum was later going to give me some of my greatest support and dearest of friends to enter my life.

At the age of 42 and Ryan being nearly 16, he had to have rods inserted in his back. We were told that there was a 2% chance that he would lose any movement that he had. Pfffft what is 2%, nothing really but yet more than you can ever imagine.

Ryan was able to feed himself, move his arms - not with full movement, but enough to do the things he wanted to do. He had head control and could be transferred easily. He could be laying on his side and roll onto his back. This is what 2% looks like! But I am getting ahead of myself.

Ryan was booked in to have the op. My plan was to stay with him until he went into theatre, then come home, to return when the op was finished 7 hours later. But the doctors told me that I wasn't going to be allowed to leave and had to stay at the hospital, just in case.

So to the rescue the faceless people of EMC. A lovely woman with the online name of tauruschild, came and sat with me the whole time that Ryan was in theatre. Another by the name of pozzie, took updates to inform those online. They kept my nerves in check and me sane.

Two weeks after coming out, Ryan was back in. His back had opened up and it needed to be opened right up and cleaned out. This is when I first got to meet Floyd face to face. He took Peter and I to dinner near the hospital while Ryan was in theatre. Another stint in icu and on the ward and then Ryan was home again.

Once recovery was over, then we found he had none of the previous movement that he was capable of.

This, then led to a spiral of me punishing myself. While as a mother of a DMD boy, you can have genetic tests that say your not a carer, but that it was a mutant egg that cause it. You still have the guilt that you had the mutant egg. Yes I know that doesn't make sense, but no one said things had to be rational. So each set back for him, you feel guilt, then punish yourself.

So this led me at around 44, by my doctor telling me, that if I didn't do something soon, that I wouldn't see 50. So after 32 years of smoking, I gave up - cold turkey. I was quite proud of myself. Not long after, I had the worse asthma attack of my life. See what healthy living does for you lol.

I ended up in the Wesley for around 10 days. Afterwards the specialist told me, that when I was admitted, he had thought I would never leave alive. Again the people of emc were there to visit and ring with offers of help.

Now it was also around this time (or maybe a year or so before) that I took over secret santa on emc. In September each year, people would sign up to send a gift or card to another person. A co-ordinator would give you a name and address of someone to send to. I did this for 5 years and it gave me a great senses of achievement. By the time I stopped, there were over 300 people participating and thousands of cards being sent around the country.

Doing this, meant that I got to know people even better than I would of. I haven't been on the forum for years, but still have those that I got close to, in my life.

Anyway, back to my hospital stint. After getting out I had to go for a sleep study which showed I had sleep apnoea. I started to punish myself in a new way - eating. My weight went up to 167kg. Then one day I had chest pains and ended up going by ambulance to Ipswich hospital, who then sent me by ambulance to ccu at the Wesley.

Again a specialist there said to lose weight or die. So that led me to having lapband and losing 60kgs so far.

Doing that has meant that I have been able to get off the steroids for my asthma, my blood pressure medication and my diabetes is constantly in a normal range.

3 years ago I was able to go on a road trip with Jade and meet some of those from EMC that supported me through those times. I could do so much more than ever before.

Last year I did a charity walk and this year is full of doing all those things that you keep saying 'I should do that one day'.

While my 40's may have started and possibly ended early, through determination and life changes, I am getting to see it through to my 50's. From writing a lot of my thoughts and feelings down, I am finding new ways to deal with life.

I have so many people in my life that I am grateful for - Jan, Colleen, Veronica, Kerrie who are the family I choose and who have been there for me. The emc crowd, who are no longer faceless to me, but another source of strength. I am blessed to have you all in my life. These people have been through the good and the bad, they don't judge me, or expect me to behave in certain way. They accept me for who I am - warts and all.

So now I embark onto my journey of the nifty fifties. I am sure it will have its ups and downs, but I also know that I will come out fighting and enjoying it as much as possible.