Prompts for the Month – Capturing, Financing, Controlling, Exchanges, Motivating
Ever since I can remember I have been capturing memories. I have boxes and boxes of photos and photo albums from the days before digital photos were a thing. My many digital photos I wouldn’t dare to count, it would take me forever.
I have also been capturing memories with diaries. Hidden in my wardrobe I have a selection of handwritten diaries starting from around 1982! The most regular years are from when my older children were little, 1988 to about 2000. I stopped writing things down then because life got too tough and the memories from the next couple of years are imprinted on my brain and I don’t need reminding of them.
By the the time my younger children were born then online journalling was a thing. I started my first blog in 2003. In more recent years I’ve been capturing so much of our life right here on Raisie Bay. It’s full of all our lovely memories, and some of the not so lovely ones.
This post about Stars 7th Birthday Party has been one of my popular posts of all time.
And here’s a captured memory of my Little Man in a Fire Engine in 2014
Being in the UK, I am lucky to have the help of the wonderful NHS. However, it’s sad to see that it’s struggling so much. If I decided to go private then the cost would be well beyond my means, and my lovely NHS consultant could refuse to treat me once my money ran out.
Why would I want to go private? Well, I don’t complain about the NHS because I know I owe them so much, but my treatment has not always been good. I’ve even had to go to the complaints department because of the way my daughter has been treated. But my treatments cost a lot and the NHS funds them.
There are other treatments I could have that would cost a lot more. There have been mixed results from these treatments, but I guess I’ll never find out if they would work for me. My consultant is trying to get funding for one of them, but he is very doubtful it will be approved.
Another treatment is HSTC a form of stem cell treatment. I could fight for the treatment on the NHS but so far I only know of two people with my condition in the whole of the UK who have had it on the NHS. One worked, the other didn’t. I could go private, there are groups which encourage you to fundraise and got to Russia or Mexico for treatment. I really can’t see myself doing that. I’d never be able to raise the money needed, I’d not want to leave my family for the months it takes, and I wouldn’t be entitled to help from the NHS if it all went horribly wrong.
So, although unlike many other’s with my condition in other contries. I’m lucky that I get treatment for free. But Finances also play a big part in my treatment.
When it comes to my illness I like to think that I’m controlling it rather than it’s controlling me. It’s the cup half full approach and you have to have the right mindset. It doesn’t always work and I have my dark moments. But I have to have faith in myself that I can do this.
I have three young children and there is no way I’m not going to be the mother they deserve. They know I’m sick, it’s a little too obvious, but they have dealt with it well so far, because I don’t let it control our lives.
On bad days I could very easily lose control and let the pain take over. I have done and it’s awful for everyone, not just me. But mostly, I have learned that I need to take care of myself and hopefully take control of what I can and can’t do.
The only thing I can think of for this prompt is that next week I’m exchanging my view of my back garden for one of the beach! I’m so looking forward to getting away and enjoying a different view and more relaxed life for a few days.
After last months dip into self pity and despair, I feel the sunshine on my face and the fact that I have a holiday due very motivating. I have my children at home on their school holiday and they help keep me motivated too. It’s so much easier not to be self absorbed when you have little ones around to keep you on your toes.
Of course, life can be more difficult too. The pain doesn’t subside just because you have more to do. And some days have been very difficult. But I keep going so I guess my children are my motivation for getting through each day, and indeed for getting through life.
Linking up with the lovely Sheryl from A Chronic Voice who gives us these prompts each month. Together we have built up a lovely community, together we are able to express our voices about our illnesses.