Tag: chronic illness

The Master Weaver

The Master Weaver

Before you get confused thinking you have clicked on the wrong blog post somehow, let me promise you that this is not a craft blog but indeed a post about God as the master weaver.

Many of us who were once healthy and became unwell and never recovered will likely have had dreams and plans for our future. We might have studied for a career, saved money for a holiday, dated to find a future spouse etc., but when we got sick, these dreams may well have gone down the drain as they were no longer feasible options for us.

In 2015, I had recovered from a surgery to open my oesophagus which enabled me to eat again and I was ready to start studying theology, ministry and mission at degree level at university. When I left for my first term, I still had some weakness, pain and fatigue that had remained after my surgery but felt it would only be a matter of time before that went away. 2 years into the course, it hadn’t gone away. Instead, it got worse and I had to drop the practical elements of my degree and carefully plan my weeks to enable me to attend lectures and do my assignments whilst ensuring I got enough rest in too.

I was struggling and realised that although I might be able to get through the degree if I really pushed myself, the chances of me being able to practically use my degree at the end of it were slim, so what was the point of finishing?! I am a stubborn, or tenacious (a more positive version of the same word) person, so decided if I could, I would complete the course anyway. Around this time, I was introduced to the world of online forums and pages for people like me to chat about our illnesses and discuss the parts of our every day lives that our other friends and family couldn’t understand or relate to. I also found out about some online ministries and even, online churches and figured that although this wasn’t what I had intended to do when I left uni, it was a possible avenue to explore.

You might be familiar with the story of Joseph, the youngest son of Jacob, who was favoured by his Father. This made his older brothers jealous and they decided to sell him as a slave and told their Father he had died in order to get rid of him. Later on in Joseph’s life, after many more obstacles, he finds himself with power and comes face to face with his brothers again. When they finally find out who he is (a few years and cultures apart made him look very different to how they remembered him), they asked him for forgiveness as they feared for their well-being and Joseph said,

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

There are some things that happen in our lives that don’t turn out the way we want or hope them to, but sometimes the way we plan for things to happen isn’t the way that God has written the story. As much as we can have plans and dreams, our final story will be decided by God and more often than not, His way is so much better when we reflect on the options afterwards. He is the master weaver – reweaving the strands of our lives in ways we couldn’t have ever imagined and making it more beautiful than ever before!

Although I had hopes and plans to be a youth worker, that wasn’t in God’s plan. Instead, He is using me to bring together others like me online, to learn more about God, worship Him, tell others about Him and teach the Church that just because we might have a disability or chronic illness, we are not lesser than everyone else. We have lots to give, and God is using us too.

If it hadn’t have been for my chronic illness, and for completing my degree, YouBelong would not have existed, so although some days are hard, I am thankful for this opportunity and excited to see what happens in the next 12 months!

Can you think of a moment in your life that seemed to go wrong or turn out differently to how you planned or anticipated but that ultimately, was used for good? Share your stories with us at http://www.twitter.com/youbelong_2019 or Facebook https://www.facebook.com/youbelong2019

No Shame in Lament

No Shame in Lament

If you follow YouBelong on social media, you will possibly be aware that our founder has been experiencing more crashes, which have left her unable to get out of bed or do anything more than sleep and rest. Each time, these have occurred at the weekend, at the end of a busy week meaning any plans out of office hours had to be cancelled.

If you experience good and bad days with your health, you will likely be aware how frustrating this is. I am not good at expressing how I am feeling (I take myself away from people when I am in pain and when I go to A&E, I am the one making the doctors laugh because my happy instincts kick in despite having not eaten or drunk anything for 48 hours or more, thrown up multiple times over that period and been in horrible pain from spasms). I guess that’s just how I am. Sometimes it’s a positive, as it acts as a distraction at times and ensures that those around me don’t get too worried about me but it also means I struggle to express just how bad I am feeling when I am asked by a doctor, and therefore, am not always taken seriously.

I feel that sometimes, I approach God in the same way. I don’t want to show Him how I am really feeling. ‘There are people worse off than me’, ‘God’s got more important things to deal with’, and sometimes even, ‘He can’t be listening/ care, otherwise He would have done something by now’. We know that is not true. God listens to everything, He even sees our tears and counts them as prayers (Psalm 56:8). Even Jesus wept. That was it. When Lazarus died, Jesus, the Son of God, didn’t have words. He cried. Lament is not far from this. Slightly more than crying, it is about sharing our anguish outwardly with God – ‘expressing grief, pain, suffering or frustration.’

‘And it has a unique purpose: trust. It is a divinely-given invitation to pour out our fears, frustrations, and sorrows for the purpose of helping us to renew our confidence in God.’ – Mark Vroegop
https://www.desiringgod.org/articles/dare-to-hope-in-god

There are texts of lament in Lamentations and in the Psalms. It is not solely an act intended only for the Old Testament era though as Jesus Himself uses one of the Psalms to cry out to God (i.e. lament) when He is on the cross – ‘My God, My God, why have You forsaken Me?’ This Psalm in the original context of Psalm 22, goes on to turn into praise for God, but Jesus stopped there. No praise, just a simple expression of sadness and pain.

I couldn’t imagine lament as a type of prayer. When I read these parts of the bible, I would view them as humans revealing their imperfectness and Jesus, His human-ness. I certainly never viewed these moments in people’s lives as times of prayer and seeking God. My idea of prayer was, Thanks, Sorry and Please (otherwise known as TSP prayer), where was the lament part in that?! But I was wrong. Crying out to God isn’t wrong. It isn’t attention seeking or unnecessary complaining. When we are suffering, upset, frustrated or grieving, God wants us to go to Him. As our Father, He cares about us and wants to be there to comfort us. He understands. At the same time as dying on the cross, He lost His Son at the hands of those He created and understands our emotions better than we do!

So if you are having a bad day or week due to a flare up of symptoms, the loss of a job, friends, a loved one or frustration at not being able to attend church, visit family or friends or just get out of bed, lament! God is listening. Some of the Psalms end with praise when the Psalmist finds God is with them and they recognise His goodness, but Jesus just did the crying out part. If all we can manage is the crying out, and you are aiming it at God and not just grumbling, know He hears you, and it is as valuable to Him as a carefully planned out, 15 minute, TSP prayer. There is no need to hide our feelings from God. He knows what we are thinking and feeling, He knows every hair on our head. Let us allow ourselves, and our generation of ‘stiff upper lippers’, to grieve and share our pain and suffering with God. It is what He wants us to do and you can bet He will be right there with us, even if you don’t feel Him there at the time.

Glimpses of Heaven

Glimpses of Heaven

Occasionally, we hear stories either in the news or from people we know, that someone has either seen or visited heaven. This often seems to happen when the person is either very ill or injured very badly (i.e.’Heaven is for Real’ and ‘Miracles from Heaven’). Sometimes we might struggle to know whether these people really have seen heaven or whether they have imagined it or perhaps something in between – maybe God sent them a picture/ sense of heaven for comfort. Although we might argue about this, it is harder to argue that people in the bible who were described as having seen/ been to heaven really did or not. Why would God put those stories in the bible if they weren’t true?

There appear to be only 7 people in the bible who saw heaven, or a glimpse of it, including Jesus who was said to have seen heaven upon rising out of the water following baptism:

At that time Jesus came from Nazareth in Galilee and was baptized by John in the Jordan. 10 Just as Jesus was coming up out of the water, he saw heaven being torn open and the Spirit descending on him like a dove. 11 And a voice came from heaven: “You are my Son, whom I love; with you I am well pleased.” – Mark 1:9-11 (NIV)

Before Jesus’ time on earth, there were only 3 people mentioned who saw glimpses of heaven, Elisha, his servant and Ezekiel:

15 When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. “Oh no, my lord! What shall we do?” the servant asked. 16 “Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.” 17 And Elisha prayed, “Open his eyes, Lord, so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha. – 2 Kings 6:15-17 (NIV) (thought to be chariots and horses from heaven as they appeared out of nowhere).

Ezekiel saw many glimpses of heaven which are all spoken about throughout his book but it begins with chapter 1, verse 1 which says:

1In my thirtieth year, in the fourth month on the fifth day, while I was among the exiles by the Kebar River, the heavens were opened and I saw visions of God. – Ezekiel 1:1 (NIV)

After Jesus’ death and resurrection, there were also Stephen (Acts 7:55-56), John (Revelation 4:11) and Paul (2 Corinthians 12:2-4). If you want to know more, you can read their stories in the corresponding passages.

Have you ever wondered what heaven is like? Perhaps you’ve always imagined it as a place full of clouds and unicorns with big golden gates with a fancy house sat behind them with God in a big throne and angels all around, or maybe the image in your mind is more like those in the Scriptures.

As I write this, it is gone midnight but I am still awake, ironically, not because the pain is too bad, but because for that 1 in every 1000 times I take pain medication, it has really worked and the pain is almost totally gone leaving a calming tingly, relaxation. When you live with chronic pain, this is a rare feeling so when it happens, I like to lie still and enjoy it – which is exactly what I’m doing now! To me this is as close to a glimpse of heaven as I’ve ever had. A life without pain and suffering and with an overwhelming joy and peace. 

There is a song that I first heard back in 2013, at the start of my chronic illness journey, called ‘You Hold Me Now’, which is written by Hillsong and goes, ‘No weeping, no hurt or pain, no suffering, You hold me now, You hold me now, no darkness, no sick or lame, no hiding, You hold me now, You hold me now.’ This song has come back to me recently whilst I have been thinking about this post and I think this is a really good, yet probably simple, description of what heaven will be like. No more pain, suffering, fear, shame, upset, darkness, just joy, hope, peace, love and comfort.

Therefore, although those short moments in my life when the pain is gone are infrequent and irrelevant to most people, to me, those moments are glimpses of heaven. In the same way, I see heaven when I see a rainbow that reminds us of God’s promises of hope and when I hear the birds singing and feel peaceful and even when I taste something good. These are all God’s blessings to us and small bites of what heaven will be like. I am quite content and excited by the things taking place in my life right now, but I am also so excited for the day when I come face to face with God and get to see heaven in all it’s fullness -not just glimpses but full 20/20 vision, luminescent, panoramic fullness!

Have you had any glimpses of heaven this week? No matter how big or small they might seem, they are glimpses of God’s goodness and what is to come for us in eternity.

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!