Tag: fatigue

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.

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.

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.

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.)

How to keep fighting after years of suffering

How to keep fighting after years of suffering

I first became ill back in spring 2014 and between then and the beginning of December that year when I had emergency surgery to enable me to eat and drink again, I had lost a lot of weight, strength and friends but my ability to keep fighting was strong and seemingly unbreakable. Looking back now, I can see how ill I was but only because my parents have told me stories from that time and from their perspective because when I was going through that tough time, I wasn’t looking at how bad my situation was because I was too busy fighting! 

Almost 5 years later and my diagnosis list had grown and my time spent in bed has increased, I’m on more tablets and find day to day life much harder yet most of the time, I can eat and drink okay and I can walk short distances which back then I was not physically able to do. I am technically healthier now yet every day is much harder than it was before. Can you relate? Have you lost your fighting spirit? 

I think we need to look at why that is and what we can do to get it back! 

So firstly, why do we lose our fight? 

When I was in school, I struggled to do as much as others in my class when it came to physical activity but if I had to choose between short distance running or long distance I would always choose the sprints – 100m using all my strength, energy and power for a few seconds rather than using 3/4 of my energy for an even longer period of time. Simply put, my endurance is rubbish! It always has been and I don’t like pushing myself physically or starting a task that I know is going to take a long time (but maybe that’s due to impatience more than anything else!) I do think that this has a large part to play in my struggle with continuing to fight. At the start, I knew I was ill but I was so ill that I couldn’t do anything else. Without a goal, there is no expectation and no endurance required – all you have to do is simply keep going. Now I work and have expectations placed on me, I have goals to meet, one after the other, and therefore, endurance is required to meet them time and time again. Fighting non stop is hard so no wonder I’m losing my fighting spirit.

So now we know why but what can we do about it? 

  1. Be real and relational with God – within the Psalms we see the Psalmist crying out to God and telling him about the pain they’re going through but then continuing to maintain conversation with Him which leads to an answer from God and peace within the person who cries out because they kept up the conversation even after getting angry or upset about their circumstances 
  2. Rest and rely on God – when going into battle David said ‘No king successes with a big army alone… horsepower is not the answer; no one gets by on muscle alone’ (Psalm 33:16-17 MSG). 
  3. Remember the growth within – suffering is horrible, particularly when you wake up in pain over and over again without any sign of improvement. But suffering produces growth and maturity and can even plant seeds of faith in others who see what we go through and how we manage. All we need to do is to turn to God in our periods of suffering and listen and respond as we are instructed. 

There is a reason, a purpose, a goal.  All we need to do is rely on God, trust Him and His plans and rest in Him when it becomes too much knowing that He is always there for us. 

Palm Sunday – the revised version

Palm Sunday – the revised version

Here is my Palm Sunday 2019 experience, from the perspective of someone with chronic illness…

I walked into church, sat down and held my head. The music was loud, and every beat made it hurt more but taking medication for that now would mean less medication to be taken for potentially worse pains later and the side effects also needed to be considered as the fatigue was already bad and would be made by taking some pain relief. I was spaced out and dizzy and nauseous but I wanted so badly to be there. The start of Easter and my first chance to be back in church in many weeks.

After a few minutes, I decided I would need to take something to get me through the service but the medication takes a while to take affect so I continued to sit whilst I waited for the headache to fade. As I sat there and listened to the words of the songs being sung, tears filled my eyes. The people around me were fully immersed in worship and seemingly, whole-heartedly believing every word — ’cause when we see You, we find strength to face the day’. I didn’t feel strong at all. In fact I felt the complete opposite. I felt so weak. This sudden rush of emotions swept over me as I looked at people in their 70s and 80s stood up praising God with their voices, standing and raising their hands and yet here was I, a 26 year old woman, sat in a chair, lost in a crowd with my head in my hands, pain relief working its way through my system and wondering why I don’t feel God’s strength like they do. Just as I wiped the tears away, we were instructed that if we were able, to come to the front, collect a palm cross and follow the procession outside and around the church and back in again. This was just about too much for me as I watched the majority of the church collect a cross, follow the crowd and walk outside, singing and praising God. My first thought was, ‘Why God? Why can’t I do that? Why won’t you let me praise you like they do?!’ Then my mind went to the first Palm Sunday — Jesus entry into Jerusalem. I wonder what people like me did then?

The Triumphal Entry

(Mark 11:1–10)

11 Now when they drew near to Jerusalem, to Bethphage and Bethany, at the Mount of Olives, Jesus sent two of his disciples 2 and said to them, “Go into the village in front of you, and immediately as you enter it you will find a colt tied, on which no one has ever sat. Untie it and bring it. 3 If anyone says to you, ‘Why are you doing this?’ say, ‘The Lord has need of it and will send it back here immediately.’” 4 Off they went away and found a colt tied at a door outside in the street, and they untied it. 5 And some of those standing there said to them, “What are you doing, untying the colt?” 6 And they told them what Jesus had said, and they let them go. 7 And they brought the colt to Jesus and threw their cloaks on it, and he sat on it. 8 And many spread their cloaks on the road, and others spread leafy branches that they had cut from the fields. 9 And those who went before and those who followed were shouting, “Hosanna! Blessed is he who comes in the name of the Lord! 10 Blessed is the coming kingdom of our father David! Hosanna in the highest!”

Additional revised verses: And those who could not see, could not hear and could not walk, sat at the road side, a great distant from the crowd and from Jesus, unaware of what was going on, unable to get too close and participate. They loved Jesus so much and knew He could do amazing things in their lives but those with able bodies blocked them from getting near enough or didn’t offer them a way to express their love for Him in a way that suited their needs.

Obviously, we don’t know what really happened on Palm Sunday for those people who were disabled or chronically ill but we do know from other passages in the bible that in Jesus’ time and society, lepers were outcast, the blind were forced to be beggars and the lame were considered useless as they could not earn money to provide for themselves or their families. Today should be different than it was 2000 years ago, and it is in many ways. We have laws that enforce a certain level of equality but there are certain things that mean that either have yet to be made better or simply cannot be accessible to every single person. But the Kingdom of God is.

With the big focus in the UK being on politics and specifically, Brexit, at the moment, this is particularly relevant. In Heaven, there are no nations, but one Kingdom, and one over-riding, almighty, powerful King — Jesus. We might not have the power to control our circumstances but Jesus does and that was my mistake at church. I thought that God had given up on me. I wanted to praise Him and be strong and stand with my church family to worship Him but when I found that I could not, I gave up and got angry at God for my situation.

We are told in Luke’s gospel that when the Pharisees asked the disciples to stop shouting their Hosannas and Hallelujahs to Jesus, He explained to them that if they didn’t shout out, the stones would. This tells us that there is a close connection between the natural world and redemption. Paul said the entire creation groans for redemption, and from the beginning we see how creation was twisted and thorns infested the ground because of sin and the same can be said of illness and suffering (although please do not misunderstand this as me saying your sickness or disability is due to your sin, but rather because we live in an imperfect, fallen world).

Whilst those around Him were praising Him, we read in verse 41 that Jesus, was crying! Jesus is probably the only person weeping in Jerusalem that day. Why does He weep when He is surrounded by a crowd that adores Him?

Jesus wept as He took in the faces of the crowds of people who were spiritually blind to the Son of God. God is with them but they don’t recognise Him so they crucify Him, thinking they have done right by God! Jesus weeps over lost souls, defeated lives, people in the chains of sin without hope.

Let us not let our ailments, problems, disappointments on earth affect where we spend eternity. We need to give our stony places to God and praise Him for who He is and not what He has (or has not) done in our lives. He may be the King, but He is also the suffering servant who understands our situation and one day, will free us of our pain and suffering. All we need to do until then is wait on Him and recognise Him as our strength giver, provider, healer, friend, Father, Saviour, King, and Holy Spirit who is always with us.

When we stop singing because we have lost hope, the only way we can go back is to start singing again. So even if you don’t feel like, start singing and shouting praises to God and He will show up! That’s a promise.