Tag: chronic illness

Enough.

Enough.

Can you remember a moment in time or a particular event in which you loved yourself? Maybe it was when you were wearing something special or winning a sporting event at school? I can remember a couple of occasions like this and in those moments, no one could have said anything to make me feel bad about myself. I felt confident. I loved myself. 

We all struggle with self esteem at times but despite the never ending day in, day out bullying at school, my self esteem/self love has never been as low as it has been once I got ill. What I used to lack in friends, I made up for by spending time with family. What I lacked in money to buy the latest gadgets, I made up in creative, imaginary games. What I lacked in sporting ability I made up for in hard work in classes, even though I wasn’t the most academic either. 

Now I can’t make up anything. My body decides what it looks like, how hard it will work, physically and mentally, how much time I spend with friends and ultimately, what I achieve. I can’t balance out the things I don’t like about me with things I do so easily because I can’t do or be what I want. 

You might know that YouBelong was shortlisted as a finalist for the Premier Digital Awards. When I found out, I was in shock! For days I couldn’t process the information. ‘Why would anyone want to read what I’m writing, let alone recognise it with an award?’ Then I saw past winners and was blown away by how amazing there projects, websites, social media, apps and podcasts were and the shock quickly changed to imposter syndrome. I believed it because I read it, but I didn’t think I deserved it. 

I am writing this post because I know so many of us in the chronic illness/ disabled community have felt this way at least once in our life as a result of our situations. I am happy to have been seeing more posts about productivity not equalling worth going round as when we can’t work or keep a household, it’s easy to wonder what is the point? What’s our purpose?

We are taught to love our neighbour as ourself but how can we do that when we don’t love our selves. A lack of self esteem is the result of a lack of self love.  So what can we do? There are a few ways to look at this. For years I have just blocked out and tried to ignore what the people around me are doing so as I can’t be upset by comparing my lack of achievements and life goals with theirs but that can only work doe so long, especially when I use social media on a daily basis. 

Instead, I need to look at where I am getting my self esteem from. Rather than looking for it in a place I won’t find it or just blocking it out, I have decided to find it in other places – like the Bible. God tells us that He made us and that He loves us just as we are. Not just when we are running youth groups, leading services or saving lives but just the way we are. Maybe you are reading this from your bed on a bad flare up day and you can’t even get up to to get dressed or get yourself a drink. God loves you and still sees you as amazing. It’s nice to have compliments about the way we look or what we have done but it surely can’t get better than our creator telling us we are beautiful and great just as we are. ‘Doing’ nothing. 

Mary and Martha are a great example of this. One of them rushed about to get everything sorted and ready so as she could please Jesus and feel she’s done a good job. The other sat and just listened yet Jesus praised that behaviour. 

When we fix our eyes on Jesus, there is nothing we can do to make God love us less but there’s also nothing to make God love us more. Whether you are asleep all day or out on the streets feeding the poor, God loves you – you just need to work on loving you too.

Knowing that YouBelong is being recognised for something is something I can be proud of as it is not where my worth comes from, that is in who I am as a child of God. If I do this, I won’t become big headed or find myself in the midst of Imposter Syndrome again because my worth is not in what I have or have not done.

Is there some areas of your life you need to work on in terms of self worth? Perhaps your self worth is in your 9-5 job, your creativity, time doing deeds for others (never a bad thing but not where your self worth should come from) or the way you look? Write these down to remind yourself these are not the place to find your worth because if something happens to your job, your ability to create or your physical being, you will lose your worth. You are a child of God = loved and worthy.

Daring to Give

Daring to Give

“But I can’t do that thing,” said the lady as she waved her arms around. She meant sign language. I had asked her if I could sit beside her in a church service, and share her books for the songs and readings. This would help me follow and, in the case of the songs, leave my hands free to sign them.

It is a privilege to guest blog for this site. I was asked to pick out a key way the church has played a part in my journey, and the above story sprang immediately to mind. Because it’s a story of someone doing what she could, despite at first being concerned about what she couldn’t.

Since I was diagnosed with NF2*, and subsequently lost the ability to do various things, including hear, people doing what they can for me have been vital to my journey. People who pray for me. People who speak clearly for me to lipread them. People who carry my cup of tea for me (I have bad balance). People who welcome me. People who are patient. And much, much more.

On a family holiday in the Lake District last August, we decided to climb up to a waterfall. On balance (pardon the pun), it would have been sensible for me to stay behind. But my seven-year-old niece came to me and took my hand; “I’ll help you walk.” And she did. For as far as she was able, and then her mummy took over. My niece couldn’t physically help me over the really difficult parts, but that didn’t mean she couldn’t help. She went in front and told me when there were rocks to avoid tripping on. She did what she could. The lady at church, and my niece, looked beyond what they couldn’t do to what they could. Acknowledging the ‘can’t’, and embracing the ‘can’.

After the service – during which I did share the lady’s books – I thanked her for helping me. She took my hand and, putting ’genuine’ into the word genuine, she said, “It was my pleasure.” It was my pleasure. She really meant it, I could tell. Helping me – yes, me – had given her pleasure. She hadn’t found me a nuisance, or an embarrassment, or an inconvenience.

Often, I can be apologetic, thinking I’m making life difficult for people, hesitant to ask for help. But, if I hadn’t asked, that lady would have missed out on saying ‘it’s my pleasure’ and meaning it. If I hadn’t accepted my niece’s help, if I’d pushed her away, then yes, I’d have missed out on the waterfall. But more than that, I’d have rejected her gift to me. And potentially discouraged her from offering to give to me, or others, in future.

  • Remember that our Lord Jesus said, “More blessings come from giving than from receiving.” Acts 20:35b

By daring to allow ourselves to be vulnerable, to ask for help, to admit our weaknesses, we offer people opportunity for blessing. Opportunity to give to us, and so receive what is better. And, in a glorious paradox, as we offer that opportunity, we, too, are giving. We, too, are blessed. We, too, do what is better. And we become more and more caught up in the body of Christ, of which each one of us is a part (cf 1 Corinthians 12). Growing together.

  • In Him (Christ Jesus) the whole building is joined together and rises to become a holy temple in the Lord. And in him you too are being built together to become a dwelling in which God lives by his Spirit.. Ephesians 2:21, 22

How good are we at allowing others to give?

Emily sometimes describes herself as a professional patient. She has spent a fair bit of her life in hospital and knows more medical jargon than she ever wished to. Thankfully for her, this is offset by an amazing medical team.
Emily is an author and speaker. Most of her books have been written, at least in part, from a hospital/recuperation bed and, she hopes, are more accessible than above mentioned jargon. For more information, please see the links below.

Emily’s books: https://www.amazon.co.uk/Emily-Owen/e/B01EWPKC9W?ref=sr_ntt_srch_lnk_1&qid=1569511001&sr=8-1
*More about NF2: https://nervetumours.org.uk/what-are-nerve-tumours/what-is-nf2
Emily’s website: http://www.emily-owen.co.uk/

Peace in the Storm

Peace in the Storm

As some of you will know, I have been very absent from social media as a result of illness. When I first became unwell on Thursday, I didn’t think much of it as I often have Thursday reserved as a rest (which often turns into a crash) day but this one was worse than it has been in a while. As the day went on, I felt worse instead of better as I would expect to do so. I work in the office doing my 9-5 job on Wednesdays and Fridays so needed to be ready for that but as Thursday night came and I hadn’t left my bed and felt too nauseous to eat and too dizzy to stand and too exhausted to even make sense of basic words on social media, I knew something wasn’t right. I was aware that a bug was going round but I didn’t really have regular symptoms in the way I would expect. I felt awful.

If this was a stomach bug, I figured I would have had these symptoms before the rest of it and if it was the flu, I would have more of the cold symptoms which I did not have. In desperation, I cried out for relief from it all but mostly, my mind was focused on being afraid. Terrifed that this would be more than just a virus which would go away in a few days but instead a new normal. My new way of life due to over exerting my body. If this was the case, it would mean that I would be unable to work to pay the bills or spend time on YouBelong or engage in fun activities such as spending time with friends and family.

I felt like I was caught up in a storm. Rains that brought pain, wind that brought dizziness, fog that brought exhaustion and waves that broughht nausea and sickness. This analogy rolled around my mind as I lay in bed but still the connection didn’t come – until now:

‘Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, “Lord, save us! We’re going to drown!” He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm. The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”’ – Matthew 8:23-27

When the wind, fog, rain and waves ecumulated into a massive storm around the boat the disciples were in, they didn’t hesitate to wake Jesus. They knew He had the power to calm it and calm it He did. I did cry out in desperation for it all to stop but mostly out of frustration. I for sure never cried out that Jesus would bring peace to my storm. I wonder what might have happened if I did?

Peace is something that Jesus promises us – ‘I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.’ – John 16:33, but did you know that peace is a fruit of the Spirit. It is not something we just have or get, but something we grow and work towards. Often, this happens by enduring our own storms and asking God to work in us in those situations to help us rest peacefully in Him. If we do that, He promises to give us the peace that we need.

What area of your life do you most need peace right now? Ask God to bring peace into the situation and think of ways in which you might be able to action that peace. If, like me, your storm is a sickness, pray for peace and then take the opportunity to sit or lay quietly and rest in God’s peace and rest for you. If it is a rocky relationship, ask God for peace and perhaps send that person a nice text or a gift to help mend the breaks. Whatever it is, be a peace grower in your world but remember, you are not alone – God is always with you.

The silent killer – loneliness

The silent killer – loneliness

When I was in my teens, I heard stories about the older generations who find themselves at home, alone, for the majority, if not all of the week, without ever seeing or speaking to anyone else. More recently, I read a statistic which stated that more teens and young adults have identified as ‘lonely’ than the older generations. Then, 5 years ago, I became part of another loneliness statistic – the chronically ill. As it is for many people, I wasn’t aware about this missing group of people for exactly that reason. Chronically ill people are mising from society. We are in too much pain or too tired or too symptomatic to be able to mix with society for too long, if at all, each week, and this makes for a lonely existence.

I am very thankful that when I became ill, my closest friends stayed with me and checked in on me and continue to do so, but when I am having a particularly bad week due to higher pain or fatigue levels than usual, I have been known to not leave my bed or house for days at a time. I am blessed to have my family who live with and help me but without them, my days would be very quiet and empty and even more lonely than they are otherwise and this is the case for many chronically ill people.

This extract from Premier Christianity reveals the seriousness of loneliness:
Social psychologist John Cacioppo, at the University of Chicago is a world leader in the biomedical effects of loneliness. In January this year he presented some of his latest research at the Society for Personality and Social Psychology meeting in San Diego.  His findings confirmed a growing body of science showing that loneliness is more damaging than smoking 15 cigarettes a day, or being obese, or not taking exercise.  
(https://www.premierchristianity.com/Blog/Chronic-feelings-of-loneliness-can-be-deadly.-Here-s-how-the-Church-can-help)

Did you know loneliness could kill people? It isn’t just a feeling we have when we spend more time alone than we would like – it affects us physically too which, when you are lonely predominantly due to a chronic illness, means you can end up in a catch 22 circle of pain.

We are made to be together, spending time with friends and family and being part of a bigger unit. As Christians, the Church should be a part of that, but very rarely is that the case. 1 in 5 people identify as being disabled yet a much smaller than that number of church congregations have a disability. Why is this? Well, I think there are many reasons but one of the major ones is that more churches are focusing on the number of people in their churches and not on how they look after those people. Sometimes, people cannot attend a church service for weeks on end and feel sad and frustrated that they have to do so but when they finally get back to church to find no one has missed them, or if they never show up again and don’t receive a phone call, letter or check in by a member of the pastoral team, the loneliness they felt from being out of church for so long is exasperated and they may feel inclined to leave as they don’t feel wanted or cared about. This in turn causes them to stop going to church, decreasing their social activities and increasing the amount of time they spend alone annd ultimately, their loneliness too.

In the first three centuries, the early Church was one known for its love and compassion. Justin Martyr described Christian love as, ‘We who used to value the acquisition of wealth and possessions more than anything else now bring what we have into a common fund and share it with anyone who needs it. We used to hate and destroy one another and refused to associate with people of another race or country. Now, because of Christ, we live together with such people and pray for our enemies.’

Can we honestly say today that we are more interested in the people in the centre and on the outskirts of the church, and even the wider community, more than increasing the number of people who come into the church? Are we genuinely more passionate about spending our money to help those who need it than bringing in and saving as much as we can for our own benefit? Would we be willing to go out of our way, miss out on catching up with friends, skip a party or record our favourite TV show to visit or call someone who has been unwell or has not been at church for a while and help them in someway? Having a visitor could be enough, or perhaps they need a few bits of shopping? A small thing can go a long way and as we know, anything that reduces or stops loneliness completely is a potential life saver!

Looking ‘normal’ doesn’t mean we are.

Looking ‘normal’ doesn’t mean we are.

A large quantity of the people connected with YouBelong have a disability or chronic illness. For some of us, our conditions have little to no impact on our day to day activities and lives in general. For others, our lives are greatly impacted by our conditions as the world we live in is not well suited to our situations. Then there is another group who sit somewhere in the middle. Some days we can cope just fine and look and act like anyone else but on other days we are home or even bed bound, unable to to do anything for ourselves and truggle constantly to control our symptoms with medications and therapies. I fit into this circle in the venn diagram of chronic illnesses – the one that overlaps the ‘no effect on daily life’ and the one that says ‘unable to participate in daily life’.

As I was born without health issues, I have had to adapt to the changes that have taken place in my life as a result of chronic illness…. but so have those around me. Although I work, I can only do so part time and even then, I can only do that because my parents drive me to and from work and allow me to live in their house as I cannot work enough hours to afford to live in my own place. Even if I could, some days I am unable to get up until muchh later in the day which means I do not drink anything or eat anything without my parents bringing me things and helping me out with the cleaning and general household jobs.

As I said, I am in the middle circle of the venn diagram so sometimes I am doing okay and my symptoms are under control and other days I am really unwell. A lot of the people in the chronic illness community describe these as good days and bad days and we all know what that means. A good day does NOT mean symptoms free. If we suffer from pain, we probably still have pain in our bodies, even on bad days. If we struggle with fatigue, a good day might mean we can do more than usual, or not need to nap or rest as often, but we will still be tired and if we do too much, we can suddenly find ourself going from a good day to a bad day in a matter of hours. A GOOD day does not mean we are better, healed, cured. It means we are doing better than our average and may want to do more, to make the most of our good day but please take note, a good day to us, is not same as a good or even regular health day for the average person. If we decide to use our good days to do more than you would normally see us do or do things we would not normally do, don’t give us judgemental looks or doubt our conditions. If we do something we don’t normally do, it is probably because we want to do it, even though we know that tomorrow will likely be a bad pain day or a day with high levels of fatigue and are unable to get out of bed at all.

A good day may also mean we look ‘normal’ because we are up and dressed and may have our hair, make up and nails done or have our facial hair trimmed and neat. If that is how we choose to use our time and energy on our better days, why shouldn’t we be allowed to do that? Even on our worst days, many people don’t see how sick we are or feel because the illnesses are not visible. Pain is invisible, fatigue cannot be viewed apart from the bags under our eyes and the constant yawns that stretch across our faces but other people get ‘tired’ too and although this is nothing like that, it is indistingushable from the outside.

We as humans, are naturally judgemental and its often for a good reason. If we weren’t good at judging, less people would have survived the cave man days man days as they wouldn’t have known whether another person was going be friendly, or try to steal from them, attack other tribe members or even had fallen in love and wanted to start a family with them! But today, judgement leads to lots of problems, particularly with the introduction of the internet and social media where people can, and do, say what they think about someone they have never met simply because they don’t like the way they dressed or their accent or perhaps they are actually jealous of them so attack them for that reason.

Chronically ill people are constantly judged for how many medications we take, being absent from work or school so often without ever looking ill, being turned away from hosptials because our pain cannot be seen so is not accepted as real and being questioned about using a disabled parking space because we walked ‘just fine’ when we left the car and went into the shops!

When we receive all this hate and judgement from the world, the last thing we want or need from our friends and family is the same speel all over again. In James 4 we read these verses:

11 Brothers and sisters, do not slander one another. Anyone who speaks against a brother or sister or judges them speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. 12 There is only one Lawgiver and Judge, the one who is able to save and destroy. But you—who are you to judge your neighbor?

THERE IS ONLY ONE JUDGE…. BUT YOU – WHO ARE YOU TO JUDGE YOUR NEIGHBOUR? God is the judge, not us. If your reasoning for judging someone is because you don’t believe their pain or fatigue etc. can be as bad as they make out (I can guarantee it probably is – we have just gotten really good at hiding it!), it is not your right to judge. God will do that. You are told to love them no matter what. In Luke 6 we are told to love even our neighbours. It is hard but if we can work to do that, we can also work to really love our friends and family who have good days for love cannot be true with judgement incorporated into it.

A good day is just that – a good day. Tomorrow may not be a good day, or maybe it will be. Perhaps there will even be a good week but no matter what, unless we say that we are recoverd, cured, fully better, please don’t judge us for not acting or behaving in the way you want or expect us to.

Bringing structure to YouBelong

Bringing structure to YouBelong

Today’s post is a bit different to the usual ones but hopefully still of interest and even a little bit interactive!

If you follow us on Twitter or Facebook, you might have started to notice some more structure and recurring themes each week. This is partially because it helps us to keep up the content and ensure it is frequent and also that it offers something for everyone (hopefully!). I thought it might be a good idea to explain this new structure so as you can know what to expect when following YouBelong on those structures and if you don’t follow us on social media already, perhaps this will help you see what we do and give you an insight into what you can expect to find in the community there.

Monday
Monday is the first day of the regular working week and therefore I wanted to keep things light and encouraging and open up the community members to receive prayer or, if you feel like you would like to, to pray with or for those who comment their prayer requests for themselves and others. Sometimes the posts on a Monday will be minimal and may consist solely of a post asking for people to post their prayer requests and for others to pray with those people and other times there will be some prayers to pray together or some other more creative prayerful posts. In order to keep things memorable, Monday is Mediation Monday – meditation meaning intervene on behalf of others. In this case, the idea is we intervene for others and take their prayer requests to God, somtimes known in churches .

Tuesday
Transient Tuesday as it is now to be known as, is the day I will be sharing my short(ish) blog posts. The word ‘transient’ isn’t really the right word to use but I wanted to keep the same pattern of names with the same first letter as the day name throughout and it’s not that far off! As well as sharing our most recent blog post, we will also be encouraging you to share yours with us by tagging @YouBelong_2019 and #TransientTuesday and we will share as many as possible.

Wednesday
Each Wednesday is going to all things worship. There will be a mixture of worship and praise songs and verses from the bible about worship and sometimes there might even be some quotes or stories about people worshipping God in amazing ways. Some weeks there will be multiple posts and some days will be more quiet due to other commitments but I will do my up most best to ensure there is always something.

Thursday
Thursday, or Theological Thursday as it will now be referred to, is a day to post about some theological questions (sometimes these will be prompted by issues raised in the news or from the blog posts on the Tuesday and sometimes they will be generic theology discussions surrounding church, faith and chronic illness/ disability and other topics that arise in these contexts. We will be encouraging as much interaction as possible and we want to hear a variety of experiences and opinions – all we ask is that we keep the discussions pleasant so as not to upset others in the community. Encouraging others to see our point of view is one thing, forcing our opinion on others or telling them they are wrong is another and will not be tolerated. We are a Christian community so although we will have differences, we have one big thing in common and that is Jesus who showed patience and understanding and love towards all, even those who were clearly wrong and against anything and everything Jesus stood for.

Friday
The one word I use more than any other when describing YouBelong to other people is family or community, therefore, Fridays have come to be known as Family Friday as a way of encouraging people in the community to share a bit about themselves so that we might get to know one another better. At the moment, each Friday has been kicked off with a question posted from the YouBelong account which could range from asking about the members’ favourite colour or animal or food, the place they live, their favourite memory or almost anything else about them as a person and the world they live in. The hope is we will find some things in common to talk about and just generally get to know each other a bit more beyond our illness and disabilities.

Saturday
This is a bit different to others mostly because I, the owner and founder of YouBelong, am currently working part time whilst being full time ill, and trying to grow and maintain YouBelong, the one area of my life I am passionate about and working to make into my job full time. Due to my lack of time and energy, and needing a down day, Saturday has been labelled as Spontaneous Saturday giving us some freedom from posting at particular times of the day or with a certain style of post. Sometimes there might be no posts on a Saturday and other Saturdays might have 10 or 20 posts which might be about what we have been up to in YouBelong world or some interesting posts from others, a beautiful passage we have discovered in a book or almost anything else! I hope you are okay with and understand why this is the case. Hopefully in the coming weeks and months as the team grows and we can get some funding the word ‘spontaneous’ might just become something a bit more interesting!

Sunday
Finally, Sunday. I say finally because as someone in a 9-5 job, Monday is the start of my week although I see Sunday as both the beginning and the end (that makes me think of another key figure in YouBelong land who is the beginning and the end…) so although I had a lot of ideas that would have been nice to use for Sunday, as some of the community attend a physical church and others do not, I thought it would be nice to have Still Sunday. So far, it has been shaped around church attendance in the UK being most common in the morning and the majority of the Christian community having Sunday afternoon and evening as a time of rest and time to spend with friends and family. Therefore, Still Sunday will consist of a few posts, sometimes in a block and sometimes scattered througout the day, encouraging us to be still in sit in God’s presence, to say thank you for the week gone by, raise any worries we have as a result of the week just gone and say thank you for the week that is coming and think about where we might need God with us more thann normal, bring others to Him who mighht need an extra special tough and to listen to what He might have to say to us. There will a variety (like on Worship Wednesday) of verses, songs, thoughts, prayers and more so hopefully, there will be something for people from all backgrounds, traditions and lifestyles.

I am really looking forward to seeing how this works out going forward especially as it should mean I am able to connect with more of you and I hope this more frequent and structured approach will enable more people to learn about the YouBelong community and join us as we support one another and spend time together, and alone, with God.

The importance of faith deconstruction in chronic illness

The importance of faith deconstruction in chronic illness

You may recently have been aware of Marty Sampson, Hillsong song writer and worship leader, who recently posted on his Instagram account that he was struggling with his faith and had even come to the point where it was easier not to have a faith at all than to battle with the ongoing questions and doubts that arose in his mind. The majority of the responses were sadness and disappointment and others simply shared their prayers of hope for a new found faith for Marty and wished him the best on his journey.

I have to be honest that my first thoughts were ones of shock and sadness as I found out that the person who wrote one of my favourite and most impacting worship songs, ‘O Praise the Name’, was no longer identifying as a Christian. I couldn’t work out how someone who once wrote such powerful words, seemingly from a place of strong faith, could end up disowning the God he once sung lovingly about.

Then I remembered my journey. When I started my degree, my faith felt foundational – despite what has happened so far in my life, my faith has never left me. I have overcome some very big challenges so was sure I would never lose my faith now! Then my illness progressed to the point I couldn’t work or fulfil the full criteria of my degree or even do the thing I thought God wanted me to do – be a Youth Pastor. My faith wobbled.

“Why would the God who made me and loves me cause me to be unable to do the thing I not only love to do but also that would help spread the good news and bring others to know and love Him?” This was just the beginning. From here, I found myself questioning everything I ever knew, even those things that I once would have argued were unarguable and parts of my faith that simply couldn’t be wrong such as, God made me and God loves me and even, that God exists! I was terrified. Despite feeling like I was losing my faith, I was desperate not to do so!

Around this time, we covered faith development at uni (what amazing timing!), and I realised that these periods of seemingly, losing faith, were actually periods of rediscovering and affirming it. A faith established in childhood (such as mine) which isn’t challenged or questioned, cannot and will not grow. I don’t know Marty’s life situation but I would not be surprised if something has recently occured that has caused him some distress or grief and has kicked off this period of faith deconstruction. My questioning started because I was chronically ill and had taken the time to reflect on my situation more deeply than I would usually because the issue was affecting my entire life in one way or another so I had no choice to wonder why and attempt to make sense of the situation.

As you might have guessed by now, I am very much FOR faith deconstruction. Although its a hard time, its also a time where I have learnt not only more about God but also more about me and what I really want in life. The trick, I have found, for getting beyond the ‘lost’ phase, is to find those key things that ground your faith and to recall the faith moments – the ones which have anchored your faith, and gradually work through the questions you have one by one with no pressure to get the ‘right answer’ or arrive at one by a particular deadline.

From here comes the reconciliation stage. Now you have unlearned everything you believed about God and Christianity, you can relearn it in relation to your situation and experiences. It is going to be hard but in the end it is worth it.

There is so much more I could say but the key point is that without being willing to embrace the deconstruction phase of my life with chronic illness, I could never have got to where I am now and have a strong established faith once again (yet always ready to be broken down and question everything over again!). If I had not have allowed myself to question and be challenged, I would not be in this same place. The greatest piece of advice I would give to anyone watching someone else going through this is to give them space and time. Be open to conversation but don’t push it or hurry them. Pray and let them rediscover God through your simple acts of love and patience.

When a miracle doesn’t feel like a miracle

When a miracle doesn’t feel like a miracle

Just over 2 weeks ago I lay inside an MRI machine for almost an hour whilst the technicians moved the table back and forth with me on it to get images of my spine and surrounding tissue. 20 minutes in the pain hit me hard but I couldn’t move or I would risk damaging the quality of the images that were taken which might mean I had to lie still even longer whilst they re-took them. My eyes filled with tears but I got through it.

Today is day 3 of lying in bed trying to find that comfortable position that doesn’t seem to exist whilst at the same time, battling with nausea, fatigue, headaches, dizziness, the side effects of the tablets I have been taking in the hope that they will at least reduce the pain a little bit. I have already had my pain relief changed to a different tablet which can be taken alongside other pain relief I was taking for my regular daily pain, but the doctors won’t give me more until the MRI results are in and we know what is causing the pain.

I know that Googling symptoms is never a good idea but in my desperation to find answers and relief, I typed in ‘back pain’. A lot of the results that came up were not relatable as they talked about back pain caused by injury or short term pain. Mine has been progressively getting worse for 18 months after waking up one day in pain without seemingly any cause. As I kept scrolling I found an article from a hospital which stated that the use of MRI scans in diagnosing back pain is generally not recommended as very often it will show some ‘issues’ which many people have but that they are not aware of therefore, it is unlikely that these issues are the cause of the pain.

I was diagnosed with mild/moderate degenerative disk disease and schuermann’s disease a few years ago but the medical professionals didn’t feel that these issues were capable of the causing the pain I was experiencing then and I was told to simply ‘get on with it’. Now, the pain is 10x worse, I am terrified that when I get the letter with the results on through the post it will say ‘nothing to comment on’, i.e. no issues that would give a reason for the pain I have been having for the last year and a half.

I know of some people who would be giving God the glory for that because no issues on a scan means that there is nothing serious that needs to be addressed, no operations needed or drastic treatment methods. It would be the miracle everyone had been praying for. I don’t know if you have every experienced back pain (statistics would say that it is more likely that you have than haven’t), but when you have back pain that goes on for many, many months without much relief, it changes the way you move, live and feel emotionally and can even affect you spiritually. I most definitely have struggled with the mental and spiritual battles that come with long term pain and other symptoms associated with chronic illness and it is no easy feat. If the MRI comes back showing nothing that can/ needs to be addressed, I know I will struggle with the mental and spiritual aspects at an even greater level as just because the medical world can’t see my pain, it doesn’t mean it goes away. The pain stays there but I have to continue to fight for medication and care and support and even fight with God for some kind of answers in order for me to make peace with the situation and with Him.

In his book, ‘God on Mute’, Pete Greig told the story of a university peer who despite his young age, showed a great amount of faith. One day, he hurt his back and was obviously struggling with the pain but one day, he came over to Pete and told him that he had been healed, “it’s just the symptoms I can’t get rid of’, he said. I think we can all agree this is rather silly. If my MRI results come back showing nothing, it doesn’t mean I have been healed of whatever was the problem if my back is still keeping me awake at night.

When I spoke to my physio shortly after the MRI she was concerned by some of the symptoms I have been experiencing and said that she would keep an eye out for my results. That was the first time that anyone had believed my pain and had been concerned by what could be going on. Now, if I get a clear scan back, of course I will be happy that the possibilities that my physio had considered to be the cause of my pain are not the cause as non of them are very pleasant diagnosis, but at the same time, how can I move forward when I am so much pain all the time and no one believes me or is willing to treat it or dig deeper into what the cause might be?!

I don’t often go forward for prayer at church simply because I have done so so many times before and yet I am still ill and therefore I figured that there must be a reason for it but in the depths of intense pain, I took myself forward for prayer on Sunday morning last week. As I stood up, I was hoping that they wouldn’t try to tell me I had been healed or tell me it was my fault if I wasn’t, or even worse still, if it made them feel bad when they weren’t able to make me better (I know that sounds ridiculous but that’s just the way I think). I was thankful that none of the above took place but that they instead told me to come back for prayer persistently. They didn’t even follow this up with “until you are healed” so maybe I will go back again and see if God has something to share with or do for me – a miracle like other Christians thought, but not necessarily a medical miracle.

To sum up this rather longer than intended blog post, yes, God can and does still do miracles but a blank scan or blood test doesn’t necessarily mean a miracle, particularly if the person is still in pain or symptomatic. Perhaps the issue is just not visible in that method of testing or the illness is too early on in its progression for it be picked up by scans etc. If you know someone who is going through testing for a diagnosis due to debilitating symptoms, please remember that not all ‘miracles’ are actually miracles at all, but rather the result of imperfect medical testing, and sometimes these ‘miracles’ can actually cause the person involved to struggle with their faith more. Miracles don’t do that. Real miracles are God’s way of caring for His children and helping us see Him in the world we live in. If the ‘miracle’ of a blank scan doesn’t do this, it isn’t a miracle and shouldn’t be treated like one. This person will need lots of care and support and prayers so if you can, offer to help them, whether that be attending appointments with them or simply sitting with them at home whilst they process the news. They might cry, they might get angry, they might want you there or they might not. Try to be for them whatever they need at that time. Friendship is the great act of God that can be done for them at that time.

(Note: I apologise for the length of this post and the babbling in it. I am struggling to think straight through the pain and medication blurriness.)

The Painphone

The Painphone

Over the last week when my pain has been too bad to do anything else, I have watched films. One such film is ‘The Fault in Our Stars’, originally a book written by John Green, which I have seen before but for the first time, a certain line really spoke to me – “Pain demands to be felt”. As I heard those words, I was squirming around my bed trying to get comfortable and it suddenly resonated with me on a new level. The more I mulled the words over in my head, I realised I had read something similar elsewhere. C.S Lewis once said, “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”

We are taught that pain is our body’s way of notifying us that something is not quite right and that a continuous or worsening pain is something worth getting checked out. I learnt this lesson the hard way by trusting an expert opinion for over 10 years which said ‘it’s just acid reflux’ only to finally be told years later after falling into the arms of a receptionist in tears due to the severity of pain I was experiencing that I actually had a rare condition which causes severe pain and dysphagia. Pain demands to be felt. We can sometimes ignore it for a while, but if its important, our bodies will keep alerting us to it until steps are taken to fix the problem.

I am guilty of being a desperate pray-er. I am not good at praying thank you and praise prayers to God, but I sure do pray desperation, ‘I can’t do this anymore, take this pain away now’ sort of prayers. Pain causes me to take notice of God again and turn to Him when sometimes, I have not done so for some time. In an article about C.S.Lewis, Jana Harmon wrote, ‘Pain takes away our false sense of happiness, draws our attention to God and our need for Him. Even in “good, decent people,” the illusion of self-sufficiency must be shattered. And, like a good and loving Father, God is willing to accept whatever surrender and sacrifice we have to offer.’

We can so easily be distracted by the earthly things, and by our desire for control, that we lose track of God, particularly on days when life is good and we don’t have issues with our health, the trains run on time, we don’t get into arguments with our loved ones, money isn’t a problem and the sun is shining. But God isn’t just a HELP button. He is there all the time and wants to be part of our lives and recognised for who He is. If quiet whispers in the night don’t work, nor conversation in the coffee shop, God won’t put off using the megaphone.

I have read stories about people who have great lives, great friends, great health, great jobs, lots of money and they die happy and healthy, but never know Jesus because they don’t feel the need for Him in their perfect lives. Then there are those who struggle through life and find that they NEED Jesus to get through it. but when they die, they spend eternity in Heaven with Him. Some people accuse Christians of using God as a crutch, as if pain causes someone to conjure up an imaginary friend who if you believe is there, will create a placebo effect, making you think you are better when really, you just believe you are, therefore, the symptoms lessen or go away completely.

My calling out in desperation to God could look like using God as a crutch but I know He’s there in my pain so when it ‘demands to be felt’, I know God might be calling out to me butt He is there for me to lean on when I need Him. Sometimes its just a sense of peace, sometimes He sends someone else to keep me company or to bring pain relief in tablet form, and sometimes He makes the pain miraculously go away. Whatever people call it, a crutch, a miracle, I believe God uses our pain to help us keep focused on Him and if that is what it takes to bring me back to Him, I am okay with that because I know He will respond. Now I just need to work on listening to Him without the use of the megaphone…. I don’t want to wear it out too soon!

Healing or Wholeness – what’s the difference?

Healing or Wholeness – what’s the difference?

Definition of ‘Wholeness’According to the Miriam Webster Dictionary – ‘The condition of being sound in body. The quality or state of being without restriction, exception, or qualification.’

I believe this definition is exactly what causes the confusion and arguments around healing because it makes healing and wholeness one in the same by stating that only when the body is ‘perfect’ can wholeness be achieved and I just don’t think this is right.

If we are going to be looking at wholeness from a Christian perspective then no, people with disabilities are not ‘whole’, but nor are those without disabilities. Even those people who spent most of their life with brilliant health and fitness. no mental health problems, relationship issues, financial issues, spiritual battles, etc. aren’t whole until they reach heaven.

Philippians 3:12-13 reads, ‘Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. 13 Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead’.

The original word used in this verse to mean ‘perfect’ is the Greek word ‘Teleios’ which is also translated in some versions/verses to mean ‘whole’. The fact that we are taught in this passage to strain or strive for wholeness tells us 2 things:

  1. we are in control of it – we are not in control of how we are born or what happens to cause us to become ill or disabled therefore, removing a disability is not part of becoming ‘whole’.
  2. we will never get there in this world – we are told to strive for it which suggests it is an ongoing challenge. Only in Heaven will we be fully whole and the reason for that is because once we are in Heaven, we will be clean and without sin just like Adam and Eve were before they disobeyed God in the garden of Eden. God punished Eve with pain in child birth but it the suffering that might her less than perfect. It was her sin.

The same goes for us. We are not less ‘whole’ than others because we can’t see, hear, walk, struggle with pain or fatigue, don’t have 2 arms and 2 legs or can’t function in the world in the same way as the rest of society. The only reason we are not whole or perfect is the same reason as the marathon runner next door, the lady across the road who spends all her waking hours doing the gardening, the postman, or the shopkeeper. We are born into a world of sin and in order to be free of it, we need to know and love God and those around us and in our eternal life, there we will find wholeness.