It's been a while, hasn't it? After my last post, things started to get worse again health-wise. The last few months have been tricky - balancing pain, fatigue, a toddler and my first real bits of freelance writing (hurrah!) Managing doctor's appointments and chasing referrals has been a part-time job in itself.

I'm not sure I have much to write about - I don't feel I've made much progress in how I feel about my health, and things have got worse physically. But writing about my experience does help me see the good in my life a bit more - there's a process somewhere in my brain that means putting words on screen brings things into order. I guess it's a well-used therapy tool, writing.

I'm thankful for Spring - it has come at just the right time for me. Being ill in the winter is not pleasant. But sitting here looking out the window at the sunny garden gives me hope. It reminds me that seasons change, and mine will too, sooner or later. Even in this season of pain and unresolved issues, I've made some choices that have been challenging, but so worthwhile.

Taking on some paid work has been wonderful. It reminds me I have an active brain, and it's refreshing to be thinking about things totally outside of the reality of my physical life. It gives me confidence that I do still have skills that I had honed before. I haven't forgotten them, they sit there waiting to be used, whether I call them up or not. There's also an excitement in thinking I can contribute something to the household income. Not megabucks, but something: a extra meal out, or some new furniture.

So what's the rambly message of this post? That hope can come from outside sources - the natural movement of the earth, wonderful friends, good doctors. But it can also come from inside - taking choices that seem overwhelming, but that just might produce joy, purpose and confidence.

Feeling better

For the past six weeks life has been so different. After a mega steroid injection into my knee, I've had a lot less pain, been a lot more mobile and generally felt more human. Hurrah!

It's been wonderful to get out and about, take the Little One on some mini adventures, meet up with friends. But it's also been a bit of a shock to the system.

Feeling better is a positive change, but it's still a change, which always brings tricky questions to deal with. I've found myself in a bit of a pickle trying to figure out what I should be doing - should I be getting involved in all the things I couldn't do before? There is so much I could do, so how do I decide what's important? There have been days when I have overdone it and ended up sore and exhausted, and days when I have not done much and felt bad about it. But I'm so thankful for what I've learned about my value over recent months - that it doesn't lie in how 'useful' I am.

I'm now beginning to feel the steroid wearing off and my legs are getting creaky again. Coupled with a recent change of medication, it's reasonable to expect there might be some bad weeks to come (let's hope this isn't the case, but it helps to be prepared). I'm so glad I've focused on my bucket list of fun things to do with the Little One while I can, rather than trying to save the world.

Small things

A drizzly walk to a Dagenham corner shop isn't most people's idea of excitement. But when the Little One and I hung up our soggy coats and sat eating the spoils of our expedition on Monday afternoon, the sense of achievement I felt was huge. The ten minute round trip had taken us over half an hour, and to me, it was time well spent.

For the last two months I have been unable to walk much or drive, so we've been relying on friends and relatives to ferry us around during the day. But this week. I started to feel better. The pain and swelling in my hands and feet is easing, and I think even my mega-knee (twice the size of the other one) might be shrinking slightly. As well as my walking victory, I drove us to playgroup this morning. It felt so good!

I've said it before, but I'm going to make sure I relish every one of these little victories. There is so much pressure in our culture to be productive and achieve great things that we often forget to be thankful for the small things. In the past this pressure has led me to spend too much time trying to make sure I invest my time in 'big' things, things that will pay off in the future. I think lots of us live under a fearful belief that if we only relish small joys, we will become small people. Here's what I mean: when I was first diagnosed, I spent a lot of time planning all the big things I would do when I was better - travel, culture, career. I felt that I needed to make sure I'd ticked all these 'essential' boxes while I still could. After all, they're the things that make for an interesting and impressive person, right? 

I don't think so any more. As time has passed and these things have been less possible for me to engage with, they have also become less important. My last post talks a bit more about this process.

There's something giddying about the sense of freedom that comes with finally being able to do things for yourself. Hoovering, baking, shopping. The mundane comes to life in glorious everyday experiences. I hope that old fear doesn't creep up on me again, and I hope I'll never judge myself to be 'small'.

Hopefully my recovery this week marks the end of this difficult patch, but it may not be over yet. That's why it's extra-important to enjoy and celebrate the small things every day. They are the things that life is made of.

With a little help from my friends

Yesterday was a Bad Day. It started off OK, but after popping out with the Little One for a couple of hours, I found myself very sore, completely exhausted and pretty grumpy. As I heard myself barking unreasonable orders at my toddler, I realised all was not well. My husband came home from work later than expected and returned to a messy house with a fractious wife and son. By the time he had cooked dinner it was way too late for the Little One, who was exhausted by the time he got to go to bed. I sat with a grey cloud over my head thinking about how rubbish the afternoon had been. Great!

Days like yesterday happen sometimes - you feel rubbish in your mind and body and every task becomes a huge problem. My chest infection still hasn't cleared so I can't take my proper medication; the result is that I'm back to pre-diagnosis symptoms. It's annoying, but over recent weeks God has given me the grace to be dealing with it well. And then yesterday happened.

I'm very thankful for a faithful friend who, after hearing my dramatic account of yesterday's traumas, asked me this morning, "How did you deal with it?" For me, that question showed me the key to whether I go to bed having had an Awful Day or not.

The reason that I was so stressed by how I felt was that I was trying to do it alone. Despite overcoming many fears (and a huge amount of pride) about asking for help this year, there are still moments when stoic endurance seems best to me. My friend's question made me realise that I didn't deal with it. Refusing to get support meant nothing could change yesterday afternoon.

But today I realised I could be different. Having slept little overnight and still feeling physically rotten, I texted my mum, mother-in-law and two good friends, all of whom have helped look after the Little One today. I've been able to sleep, rest and eat properly. I've also been able to think through yesterday's events and what they mean for me.

Asking for help does mean eating my pride. It also means choosing to believe that friends and family value my health above their comfort - something I know is true. I don't know why the though of inconveniencing someone bothers me so much. If a friend asked me for help, I would always relish the opportunity. It's funny how we judge ourselves so differently to others.

Another thing I'm learning it's that letting people help you can benefit them as well as you. As I've let my mum and some close friends do my hoovering, look after the Little One and give me lifts, I can feel our relationships deepen. When I'm at my most vulnerable, I'm also most real. And who doesn't want a real friend? Spending extra time with people also gives us more opportunity to chat about how they are. I hope I can be a good friend by listening, and hearing about their lives helps me become less focused on my own issues.

So, it wasn't a great experience, but here's what I'm taking from my Bad Day:

1. Ask for help when you need it. There are wonderful people who I trust and who I know want the best for me.
2. It's not always a big deal. While a task might involve pain and difficulty for me, it is probably easy as pie for someone else. So asking them to do it for me isn't as big a deal as I imagine. Cleaning the bathroom might be a marathon to me, but I need to remember my perception is a little warped at the moment.
3. Warning signs. It's not OK to be unreasonable with the Little One. Losing it with him is a sure-fire indicator that it's time to ask for some help. Barking crossly is not allowed!
4. When the boot's on the other foot... When someone asks me for help, I need to recognise the privilege this is, and honour their request, if I can.

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!