Saturday, 9 August 2014

Life changing

I'm determined that this blog won't be me just venting or complaining. I want it to be a helpful, open dialogue about living with a long-term condition (or several) and how we can learn to deal with its challenges graciously. It's easy to convince yourself that you have a right to complain when things are difficult, but it doesn't help anyone.

I decided to start writing because I want to figure out how I can deal with difficult health issues positively. The last two years have been strange for me. In some ways they have been the worst experience of my life, but I want to look back and see them as life-changing in a positive way. I want to discover what bounty can be taken from the ‘years of waste’ that I currently perceive.

After the birth of my first (and only) baby almost two years ago, I experienced months of severe joint pain, chronic tiredness and rapid weight loss. I was eventually diagnosed with Rheumatoid Arthritis This was a major blow - there is no cure, and coupled with my existing Type 1 Diabetes, I just felt battered. It seemed so unfair that it was happening to me!

However, the promise of effective pain relief in the form of powerful immuno-suppressants cheered me a bit. At least we could do something about the pain and stop the disease progressing. After a few months of treatment the pain eased and I started to feel much better. "Great, life can begin again!" I thought about all the exciting things I would be able to do with my little boy like going on long, tiring day trips and maybe even looking for a  part time job. It wasn't to be though - the next few months were riddled with complications - infected blood vessels, swollen arms and then a horrible chest infection that meant I had to stop taking my RA drugs. In a few short weeks I felt the pain creeping back in.

Being in pain for long periods is draining and if you are not careful it can suck the hope and fight from you. When you're feeling low, every working day, every social event, every holiday plan becomes a stressful blip with the potential to cause further pain, fatigue or danger. Before a recent holiday, I realised I was so fearful about the possible difficulties of travelling that I would rather not go.

At that point I knew I had to make a decision - I couldn't go on thinking this way. I couldn't control what was going to happen, so I needed to stop worrying about it and let myself enjoy each experience. The freedom I felt by just choosing to think differently was immense. My mum's old phrase, "Let's cross that bridge when we come to it" has become the mantra I keep having to tell myself again and again.

Having a long-term condition is difficult, but it gives unique opportunities to make the most of what you have, learn to rely on other people and enjoy the small things. That's what I'm interested in talking about - please share your thoughts with me!

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