Friday 25 February 2011

Struggling slightly.

I have been having a difficult time recently.

I suffer from a condition called FSHD, with the combination of the affects of Polymyositis.

FSHD is a muscle wasting condition, caused by a genetic fault, which may be affecting the regulation of the level of many of the different proteins in muscles. And Polymyositis is a disease of muscle featuring inflammation of the muscle fibers. The cause of the disease is not known. It begins when white blood cells, the immune cells of inflammation, spontaneously invade muscles. This then being combined means that the proteins that are being provided are being blocked and and "attacked" by the white blood cells.

My experience is written below is how the illnesses affects me, It might not affect everybody the same. What is written is my experiences and as stated by the medical specialists I see that not only is my personal case is rarely seen, that it is also one of the most severe that they have seen.


My Muscles are slowly deteriorating and getting weaker and weaker.

Generally at the moment my arms still have use, although I am feeling that they are getting weaker. An example of this is that on a varied day I struggle one handed to drink a cup of tea of hold a pint glass of liquid without my other hand supporting the lifting from the base of the cup of glass.
My legs are getting a lot thinner and are also getting weaker. I am now not walking without aid, as I often loose my balance and it assists low and shallow steps.
I tend to twitch a lot. It has always been explained to me that the twitching is where my muscles are tired and where most people would feel the strain in their muscles, this is usually where your muscles tighten to control the strain, my muscles do not have the strength to keep the strain so my muscles twitch to release the strain. Although, I can make motions like the twitching to help, 90% of the time these are unwanted and uncontrolled twitches.
An example of how this would affect me: If my legs twitch I would fall (Collapse) where the strength in my leg muscles relax. If I am holding a drink it would fall out of my hand or go all over a surface. If I have an all body twitch I fall back in a jerk and fall without being able to reach and protect myself.

This is currently what I am coping with everyday. My health has not really, up to this point, upset me. It has been something I have had for 15 years and has almost been a part of my life. But now I am really struggling, I am finding everything so difficult, can barely go a day without falling or twitching with an affect.
I understand that my existence here on earth with ill health is nothing to the potential healing and eternity I have in heaven with the Lord. That gives me hope for new life, that gives me hope that 40 odd years of suffering is tolerable. But I suppose like most humans, I struggle with the now. I find it difficult to keep waking up knowing I have another day a head of pain and annoyance. I pray daily for healing now, remembering the Lord's prayer verse, "Give us this day our daily bread" Asking for a piece of what we have in eternity now. But it is still difficult to go day by day.

I pray, read, act in fellowship and try my hardest to be a good example for God to use. I like the fact that God may use me and my illness for good. Knowing that He didn't give it to me, but being reminded that He likes to turn bad to good. These are all things that keep me on the up, but the more my health deteriorates the more difficult it is for the reasoning and with the illness being untreatable it is becoming a struggle to cope.

So that's what's going on with my health.

For any others that are struggling with their health maybe these verses might help, they have helped me, even if it does need it to read it regularly!

Revelations 21:1-4
Then I saw “a new heaven and a new earth,” for the first heaven and the first earth had passed away, and there was no longer any sea. 2 I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. 3 And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 4 ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

Isaiah 33:24
24 No one living in Zion will say, “I am ill”; and the sins of those who dwell there will be forgiven.

Ecclesiastes 9:4-6
4 Anyone who is among the living has hope—even a live dog is better off than a dead lion!  5 For the living know that they will die, but the dead know nothing; they have no further reward, and even their name is forgotten.

(Personally, the last is my favourite, My hope is in God, highlighting the "but the dead know nothing; they have no further reward" Meaning when we die in Christ we will receive the greatest reward, not needing any other.)

Where has the respect gone?

I have had the most awful experience today and thought I would share it.

I was just on the way home when I remembered that my wife had asked me to grab a few items from the shop: mainly for a replenishment of Juice for my Son.

Now, for those of you who don't know me I have a muscle wasting condition called FSHD (FacioScapulaHumeralDystrophy) which is a type of Muscular Dystrophy. My body is deteriorating and walking is getting the point of very difficult to near impossible. When I walk I have a very unbalanced "wobble" and extreme foot drop with lower leg extension. This makes my walking very obvious, but I am happy to do it as long as I can, knowing that quite recently I have been falling even when I have my stick, therefore meaning me using my wheelchair more and more. I didn't think a quick shopping trip for squash didn't require the wheelchair. it was an easy get out of the car, walk 2meters in the shop and get the assistant to grab what I wanted. Easy!

There was a group of 6 teenagers. Aged between 13-17 walking towards me. They spotted me and started shouting abuse and trying to copy my walk, trying their hardest to show each other the best impersonation.

This isn't the first time this has happened so I ignored it, If it was one or two "youths" I would have normally have stopped and corrected them, usually by informing them of what they are making fun of and then the final guilt trip of telling them that this illness is killing me. It usually has an effect of the one or two. But I would never dare a larger group. I ignored it and walked into the shop.

I purchased what I wanted and came out. These boys were lined up against the shop front, waiting for me, they decided to continuing their impression of my walking and health from the shop door to my car door, understanding again that it was only a 2 meter distance. Whilst mocking me, they were shouting, "what a spas" and "where did you learn to walk?"  I, uncomfortable by the experience, ignored it and got in my car and drove upsettingly home.

Now, here is my question. Where is the respect? I understand the younger children who question "Mummy what's wrong with that man?" They are curious, not disrespectful. But these teenagers had a clear purpose, to make fun of me, to make themselves look "big" to their friends and in hope to scare and upset me. Which, although they did, I hope I didn't show.

The whole experience has quite upset me and to be honest has made me a little nervous about going out by myself again. I will pray and read and hope to build my confidence and courage up again, but in the meantime, I'm sure that is all I can do.

Tuesday 22 February 2011

Facing your Giants: Barbaric Behavior

Continuing my reading of the 'Facing your Giants' book by Max Lucado, the Chapter Barbaric behavior once again got me thinking (as this book keeps doing).


A Japanese solider in a World War II Prisoner of War camp was stock-taking and he found a shovel was missing. That sinking feeling, the horror! Fear sets in: could one of the prisoners have stolen it? They must have done. He rushes out to the courtyard screaming at the top of his lungs for all the prisoners to line up. His gun butt bumped up and locked against his shoulder, moving from one prisoner to another in very broken English demanding to tell him who had stolen the shovel. If they didn't tell who it was he would kill one prisoner every minute until he found out. A Scottish solider steps forward "I did it" he proclaims. BANG! He is shot. But the shovel wasn't found in the prisoners possessions.
Later the Japanese solider recounts the shovels, and the missing shovel that had caused all that trouble was there. He had miscounted, and in his haste and anger he didn't consider that he was in the wrong.

Reading this I thought what an amazing story, what a brave Prisoner to step forward, but maybe, just maybe he had enough of his treatment in the camp and thought that was the best option.

Returning to the chapter in the book, it continues the theme of David's Story and picks up where hopefully my last David Blog left off.

David, showing God's mercy and saving the life of King Saul, had allowed David to inherit the land around eventually becoming King. David, though at this point had his own personal army, had all the men with him who were trying to hide and escape Saul that previously had fled to the cave. There were, by this point, around 600 men. David used these men to play a similar role as Robin hood and his merry men by protecting and helping all the surrounding farms and hamlets.

Shepherds were moving their sheep closer to them knowing that they would be protected.

But trouble started. After harvest, whatever they had spare after their stocktake for winter, went towards a harvest festival party.

Nabal, a neighbouring farmer, who had previously sought for David's protection decided to hold such a party. It was fantastic! David thinks 'wow, this sounds like a good time! I might allow some of my men to go.' Turning up, Nabal pretends to never had heard of David, or his men, trying to make them seem like beggars turning up looking for food:

"10And Nabal answered David's servants, and said, "Who is David? and who is the son of Jesse? there be many servants now a days that break away every man from his master." 
1 Samuel 25: 10-11

When David's men returned to camp to tell David, he was furious. He gathered his men and were ready to go and kill Nebal.

Yeah!!!! I can't tell you how much I felt like David here, about time for some righteous anger, how dare Nabal abuse the love and protection that David recently gave to the area!

I have been feeling angry over a few things recently, particularly about my family's views on my currently life situation. My life with my family and my life with God. They just don't understand. I really feel sometimes that with all the things with my health, my family should appreciate the difficulty of my coping with it, so they should understand that if I have found love and comfort in God then they should to be happy for me, not being annoyed.

So, as I said some righteous anger from David was exactly what I needed.

Whilst David was getting to move and attack, Nebal's wife, Abigail, had just found out what had happened with David's men. Scared of the consequences, and being a clever and beautiful woman, she decided she would try and help. She loaded up her donkeys with bread and fruit, and ventured off to meet David half way.

Meeting David at a brook where his men where gathering themselves for the final stretch of the journey, Abigail looked like a promising treat. She brought food and wine, she was attractive, this ultimately must have meant a great night was a head for David's Men. She went straight to David and begged for forgiveness.

What! She didn't do anything wrong, why is she begging for forgiveness? She apologises when she hasn't done wrong! Ultimately she pleas for David to leave Nabal alone. David looks at her, saw the love of God in front of him and decided to leave Nebal to God.

With both parties returning to their deserving camps, Abigail explains to Nebal that David was going to come and she had managed to hold him off. Nebal, not interested and too drunk to care, shakes off her words, at which point he had a heart attack and dies. David hears this, and so captivated by this woman who showed love, beauty and intelligence, they happily get married.

Oh, I can tell you I was not happy, Where's the anger and justice? The part that I related to?!

But then the chapter summarises and sadly makes me the guilty party.

Abigail offered her life for her husband and family. She took full responsibility and did it with courage, strength and purpose, to the point that in the end she was happy.

God sent His son to die for that very reason, Jesus was our mediator. Abigail stood in between Nebal and David, she mediated the situation to stop the circumstances to escalate the violence and hate. However people like to view God, whether as being nothing but loving or not, we should agree that the act of Adam and Eve made us live in a broken world of sin. We were punished; God was not only disappointed with us, but angry at the situation. All the years after the fall, we kept sinning and getting worse, and my understanding is that the Father must have been getting more disappointed and angry with us. Jesus steps in the middle and Mediates. 

The prisoner of war (mentioned at the beginning) did the same, he knew he wasn't guilty, like Abigail and Jesus, but not wanting more violence and hate he mediated the situation. This is when I felt guilty. We have a mediator perfectly placed to stop the escalation of anger and hate, so why was I looking for that righteous fight like David? Why was I so convinced it was all right arguing with my family? I, like David, was focused wrongly. When David had his focus moved by his mediator, things turned out alright. Why aren't my eyes firmly fixed on my mediator and only fixed on the troublemakers?

A question and a verse to finish.

How often are you too quick to anger, and need to take your eyes off the thing that is making you angry?

"5 Let your gentleness be evident to all. The Lord is near." Philippians 4:5

Friday 11 February 2011

Desperateness of David

I was watching Toy Story 3 earlier today. Completely love the film but really made me think.


***SPOILER ALERT***


In this film the toys have been left in Andy's room, in a trunk, whilst Andy has grown up. Andy, although he loves his toys and the memories he has had playing with them, it is now time for him to make a choice between the toys being given away or sold, put in the loft for a later date or alternatively taking them to college. Andy decides to place all but Woody (The cowboy) in a black rubbish bag to go into the loft (Woody is put in the box for College).


Now disaster strikes when Mum sees the rubbish bag and puts it out on the curb for collection. Oh no!! What will happen to our loved characters?! Woody is on the rescue and Buzz (Space Ranger) is trying to get his friends to escape the bag. Luckily, they escape, and being so disgusted that they were put to the curb by their loving owner they decide the only choice is to secretly climb into the Daycare centre's box for donation. Woody, hoping that he can change his friend's minds, goes along. They arrive and are shown the chance to be played with again-Woody is unable to disuade them. Then Woody, disgusted that his friends won't accompany him back to Andy, leaves his friends abandoned in the daycare center.


This is so different compared to the themes of the other 2 films. In film one, he risks leaving his friends and owner to rescue Buzz. In the second film you see him taken and wanting nothing but to get back to his friends. Clearly, he loves his friends, clearly he will risk everything to be with them and save them. So why was he so out of character? Why was our hero so deseperate to go back to Andy and quickly abandon everyone? Why were the other loved characters so desperate to face unknown troubles rather than staying safely in the loft?


This reminded me of the story of David. If you read my earlier post "What kind of friend are you" We left the story of David where King Saul was so annoyed at the glory that David seemed to be recieving that he tried many ways to get him to be expelled from the city or even killed. 6 times the King tried this.


David soon gets the message and he kisses his wife goodbye and runs off. He didn't dare run to family, with the fear that they too might to be hunted and killed, he really couldn't hide in another city, as again being known as this great defender, he might be targeted and killed. He wondered and came a cross a church where he met a priest called Achimelech. The preists would save their bread as an offerring on an alter every Sabbath and a week later would eat the bread. So in this instance you would have two types of bread common bread and holy bread, the latter bread being untouched until it was ready to eat seven days later. David, our hero, goes against his previous charecter and deceives Achimelech to get some bread, stating it was on Royal command. Why lie? Why has our hero who clearly understood God's love and power, the man who trusted in God when he took a sling against a giant, suddenly turned against what he knew was right? Achimelech didn't know what to do, clearly the man infront of him needed the bread. He decided to break God's law and offer him Holy bread, trusting in the fact that God would want to provide for his children. Why has our hero so badly turned?

Sheer desperation has sunk in. He needs some where for sanctuary, he needs a place to eat. David then lies for a second time. He asks for a weapon. The priests displayed the sword of Goliath, as you would in a museum and gives this to David. David, so desperate for food and protection, takes Holy food and his enemy's sword.


In both examples our heroes, turned from their natural and loved characteristics and became desperate. Desperate to survive. Both of their faiths were wavering. David thought he wouldn't be under God's protection and he would die. The man that refused King Saul's armour to fight Goliath now picks up Goliath's sword from a priest. Woody, someone we would expect to look after his friends, left them to look after themselves. Both characters, our heroes lost their focus.


With the faith that David had, he fought and survived ten of thousands of battles, killing tens of thousands of men. Woody, knew that the wellbeing of his owner would need the enjoyment of all of the remaining toys (not just him), which is why in the other films they look after each other.


Now, it made me wonder what made them, and what could make us so desperate to lose focus, and I came to the conclusion that there is quite often so much pressure we have on this life that we fall under it. I know the pressure of trying to afford to live, trying to do the right thing, trying to be a parent and look after others. This is the pressure that makes us so desperate, this is the pressure that makes some people lie, cheat and steal. But, we need to remember that even at the darkest moments, God is our focus, turn to Him and ask for His help. David stumbled, but David stumbled into God. God provides us with nourishment and equips us to cope in life. Through His teaching, through His word and through the fellowship that the above brings.


So, finally leaving you with the thought how often do you seek the help of God, to keep you nourished and to equip you at the right time?


Leaving you with these:


James 1:5-8
 5 If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. 6 But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. 7 That man should not think he will receive anything from the Lord; 8 he is a double-minded man, unstable in all he does.


Phillippians 1: 9-10


9 And this is my prayer: that your love may abound more and more in knowledge and depth of insight, 10 so that you may be able to discern what is best and may be pure and blameless until the day of Christ

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