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.

Monday, 1 September 2014

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!

Tuesday, 12 August 2014

Shoe shopping

I realised today that my first post wasn't very 'real'. So here goes, some honesty, which I'm sure will make for a more interesting read!

Yesterday me and my boys (M, aged 30; A aged 1) went shoe shopping. My naive expectation was that this would be a nice family time. I don't know how I managed to forget that I hate shoe shopping at the best of times, let alone with arthritis flare in both feet and ankles. But my beloved 'Ugly Sandals' had just snapped, and as we're off on holiday on Saturday (woohoo!) I was in desperate need of some comfy summer shoes.

I have always disliked buying footwear, mostly because I have ridiculously wide feet. This means that I can't get anything remotely graceful on my big paddles. Those pointy-pixie affairs are out of the question. But you would think getting some nice comfy slip-ons would be easy enough? 

Hm, not that simple. My ankles currently feel like there is a piece of glass wedged in the soft bit of each one, and I'm pretty sure each toe joint is lined with sandpaper. Needless to say, walking hurts, so I need hardcore, supportive, wide, strappy numbers to keep my feet supported without squishing them too much. 

After countless shops brimming with fluorescent jellies and ethical espadrilles, and trying to convince myself that Birkenstocks would be great ("But they're sooo comfy if I stand still!") I ended up settling for Ugly Merrells, round 2 - in striking fuschia as they were the only ones in my size. Shudder. M helpfully declared, "They're not that bad - they look just like your old ones." To add insult to fashion-injury, they were £60 IN THE SALE! But, at least I can walk in them, and that outweighs the fact that I wouldn't wish them on my grandmother. So husband, screaming toddler and I left victorious and went for a celebratory pizza.

My beautiful new sandals...

Here are some lessons I am taking from yesterday's excursion:
  1. Avoid 'cool' shoe shops (pumping music, retro lighting, overpriced flip-flops), they contain nothing practical or affordable and you'll leave feeling a decade older than you entered. Head straight for Jones the Bootmaker, every time. Make sure you have remortgaged your house first.
  2. Traipsing round shoe shops with excruciating feet is horrible, but at least your feet are at their worst, so you can do a 'bad-day' test on them.
  3. Be grateful that comfy shoes are available. Some people in the world just don't have the option.
  4. No one really cares what your shoes look like, and they're probably not as ugly as you think they are. In fact, my fuschia friends have already had some compliments!

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!