Wednesday, 11 March 2015

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.

Tuesday, 16 December 2014

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.

Tuesday, 11 November 2014

Hope vs Fear

It's not often I lose my cool, but I spent this afternoon more riled than I have been in a long while. The reason? A disagreement with my GP.

My chest has been gunky and crackly for about four months now, and I had a follow-up with my GP following a spirometry test. The nurse who did the test had told me about the results, and what the GP would probably suggest. But when he reread my history, a look of panic came over his face. "You need to go back to your rheumatologist. You're on methotrexate - it's probably pulmonary fibrosis. It's a common side effect." I looked at him a little puzzled; his verdict was rather grim, and quite different to what I had expected. I quizzed him a bit, and found myself getting quite cross - how could he give me such a bleak prognosis on so little evidence?! Little One didn't help matters by running round the room shouting, jumping on equipment and trying to steal stethoscopes.

Eventually I stopped fighting and apologised for disagreeing. After all, as he reminded me, he was the doctor. By the end of the appointment my heart was going, tears were welling and I was desperate to escape.

On reflection, I should have stopped myself apologising for disagreeing with him. It's not that what he said was technically wrong (although I know for a fact that some of it was!). My main issue with the consultation was his communication with me. Doctors have a responsibility to inform and warn their patients, but not to scare them into believing they are probably very sick. Maybe there is something wrong, but maybe not. Let's find out together and not jump to conclusions. But this doctor left me no room for hope. 

Each time I have one of these hope-sapping medical experiences, I have a choice. There's not much I can do to change my GP's communication skills, but I can control how I take on his words. Do I listen to that voice of fear, go home and Google the name of the horrendous condition I probably (don't) have, or stay calm and hopeful until I've seen the specialist? This time I'm choosing to stay calm. What good would worrying about it do anyway?

Have you ever had a medical professional pronounce doom unnecessarily? How did you react?!

Friday, 17 October 2014

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.

Thursday, 9 October 2014

Time waits for no man

I love lists. At the moment, I'm making lots of them: Christmas shopping lists (I know it's early, but I can't resist!), big household jobs, people to call. But my favourite is my 'Adventures to have with the Little One' list. I know we won't be able to do most of the things on it for a while yet, but I am enjoying the anticipation and the value these simple things now have for me.

One of the hardest things about being unwell is the feeling that my illness is stopping me from getting on with my life. I see my friends taking on exciting new challenges - a new job, lots of babies or travelling the world - and it feels so unfair that those things aren't an option for me at the moment. Carpe diem doesn't seem to apply to me!

I feel genuinely happy for friends with wonderful news, but there's always a twinge of awareness that hits. 'You can't do that.' Now, I know things will get better for me - there will be a time when I can work and be much more physically active. But it often feels like the weeks and months I spend waiting for medication to work is wasted time.

Yesterday I was arrested by an everyday moment. It always takes us a while to get ready for the day as I'm very stiff and slow in the mornings. It was 10am and I was drying my hair in our bedroom. The Little One was bouncing around on the bed, giggling as he plunged into the pillows. As he looked at me and grinned, I realised I wouldn't want to be anywhere else. Not in a high-powered business meeting, not on a beach in Thailand - I wanted to be here; I was lucky to be here.

I am so thankful for that moment as it made me that realise that time is only wasted if that's how you see it. Every day I have been given is precious and has it's own beauty.

And that's what my 'Adventure list' is all about - I've made a deal with myself that as I start to get more active, my priority will be those precious days out with the Little One. Being unwell has shown me what really matters. I know when the time comes I'll be hit with all kinds of internal pressure to get a job, be useful, be busy, but I'm not going to succumb. First things first.

Tuesday, 30 September 2014

Don't fear the reaper

Sorry, pretty morbid title! But death has been on my mind recently.

Not necessarily as a looming, fearful incident, but more a niggling certainty. Almost like a transatlantic flight I really need to plan for. 

I know everyone has 'mortality moments' when you realise you are not indestructible. At some point, life will end for you. But your awareness of this becomes heightened when you are 'properly' ill. With modern healthcare being so good, it's easy to believe that something can always be done to preserve your life. But one day, the options are going to run out. 

It seems an obvious thing to say, but it seems likely that my death will be caused by RA or diabetes. That might be when I'm 80, but these two lifelong friends are likely to be contributors. When one of them is profoundly affecting daily living, it is easy to imagine this event far sooner. My joints have been really playing up, so I'm feeling pretty unwell at the moment. That's probably why this grim thought has been hanging around my head.

Now, I'm not 'afraid' of death - I believe in a loving God and that dying is not a disaster! But I do worry I won't get to experience all the wonderful things in this world. Mainly, I worry for my husband and the Little One.

As I was pondering unaffordable life insurance quotes and wanting to discuss a Domesday Plan with my husband, a very famous phrase popped into my head. "Who of you by worrying can add a single hour to his life?" This has often seemed to me a twee platitude that people use when they don't know what to say, but suddenly Jesus' famous question became very literal and very relevant. I might die next week, but thinking about it isn't going to change it. Far better to spend valuable thought space on the wonders of today - playing with the Little One, eating fresh tomatoes from the garden, chatting to a good friend.

As a family, we only have a rough game plan should I die, but we figure there's nicer things to plan for!

Friday, 19 September 2014

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.