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.

Mastering the balancing act

Worrying about how your choices will impact your health can add a whole new level of stress to life when you're unwell. This is a challenge I have been pondering lately - I'm fully aware that adding this extra stress only makes things worse, but still find myself going into spirals of worry.

When in good health, I tend to be quite an active person. I don't work at the moment as I'm at home with my toddler, but when I'm feeling well I fill days with seeing friends, community work and a growing passion for craft (predictably 'mummy', I know!) Over the past year, this 'get-involved' side of me has been a bit crushed. I've often not wanted to leave the house as I'm in pain or just so tired, and the idea of facing the world (particularly with the Little One) has just been too hard. Commitments have been dropped all over the place, something I never would have done before. Even the loveliest of social plans have been cancelled.

Often cancelling or stepping out of an arrangement is the right thing to do health-wise, but it can cause an immense feeling of guilt to set in. I see friends carrying on, making new friends, being 'useful' - and I feel like I'm second-rate. I also know I can't give all I'd like to to the things I am still involved with, like our church youth work. And somewhere in my programming there's a bit of code that tells me if I am not full of purpose, I am wasting my life.

Now, I know these feelings are not helpful, and they don't reflect the truth about me or how people see me. But they can be very real when you are in a low place. I am realising that I have a choice to believe the positive over things that will bring me down. Some would call this faith - believing in something that defies your senses at that moment in time. The truth is that I am not 'useless', my friends love me and want to help and I am still as valuable when I'm doing 'nothing'.

This uselessness guilt hits especially hard with my toddler. My one job is to raise him, and sometimes I feel like he gets a second class service - he wants to be carried and I can't pick him up, or he has crisps for lunch because I can't summon the energy to make a sandwich. But I know those blips count for very little in the scheme of our wonderful relationship. The truth is that I am a really good mum! I hope he learns as much as I do as we muddle through the tricky times together.

So how do you combat the guilt and disappointment? Working out what triggers these feelings has been an important exercise. Comparing your inside to someone else's outside will never give you an accurate view of how contented your acquaintances really are. Social media can be a killer - often I see others' 'relationships', careers and families flourishing and instead of feeling pleased for them, a sour jealousy can creep in. "I should have that, I should be 'normal'. It's my right!" I have to keep myself in check, or just not go on Facebook in the first place.

I have found that reminding myself of what I can do is very important - I might not be able to meet up with a friend, but I can text or call them. I might not be able to help practically with the DIY, but I can be encouraging and interested in what's going on. I might not be able to take my son on the train today, but we can take a ride in a big cardboard box in our living room. And next week maybe we can walk to the station.

Once you've dealt with the emotional balancing act, there is the practical issue of actually getting well. The ever-changing scale of medications and side-effects. Some can't be taken with others, some require lifestyle changes (less red wine, boooo) and some just aren't worth the hassle. When I was first diagnosed with RA I was given steroids, but these sent my blood sugars crazy, and I decided the pain relief wasn't worth the increased risk to my long-term health (hyperglycaemia = bad). It can be a bit of a nightmare running a cost-benefit analysis on every drug you take, and of course, it can add pressure to a frayed emotional state. They may be obvious, but here are the rules I work to in order to make good medication decisions:

• Listen to your doctor's advice, but ask lots of questions, making sure you mention all your symptoms, all the drugs you already take and any past experiences you've had. GPs in particular may have all the info they need on a screen under their nose, but they often don't read it. This is not necessarily their fault; a GP has a few short minutes to read it all, see you and send you off with a course of action. At my surgery, it is impossible to see the same doctor more than once in a year, so I feel like I'm recounting my medical history once a fortnight at the moment!
• Write things down - questions to ask before the consultation, and the answers you are given. I do with with consultants that you might not see very often - make sure you get your moneys' worth!
• Decide what your health priority is for the next month - do you have to shift an infection? Do you need to be pain-free for a special occasion? If you are clear before you are sat in front of a medical professional giving you options, you will feel better about making a decision. Of course, you may need to flex according to the advice you are given, but only you know about your life circumstances and priorities.
• Always read the leaflets, and go back with questions if you think anything looks dodgy. I've been prescribed drugs that are a definite nono with my Methotrexate - scary!

I don't think the balancing act will ever totally stop when you are living with a long-term condition, but the scales will level off for periods of time. I m realising I need to be thankful for those times, fill them with things I love to do and not be anxiously waiting for the balance to tip.

Here's what I've learned in the past year about making tricky decisions: 

1. Baby steps. Taking a 'risk' can be something as small as walking to meet a friend rather than driving. Taking the scarier option in minor decisions has left me feeling more confident and positive about the future. When you experience a little bit of "Yes, I can do this!" it can really change your outlook.
2. Say it like it is. There's no point hiding things from your close friends and family. This is a hard one - I hate sounding like a moaner, and sometimes feel it's my duty to give some positive news. How dare I still be feeling so unwell?! But in my experience, locking down just makes me more prone to comparing my life to others and feeling inadequate. When I'm really honest, it gives people a chance to really care for you. If they won't do that, I doubt the friendship is worth much anyway.
3. Making mistakes is OK. Maybe my five-hour Christmas shopping trip last December wasn't a great idea. But at least I learned that more frequent, shorter sprees were more manageable. And a day recovering on the sofa is not the worst penance!

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!