Bloglovin

Gradually, my blog over the last wee while has been having a little make over.  I’ve now added Bloglovin as a way for you to keep up with me…

If you aren’t familiar with Bloglovin it is a website hat lets you know when the blogs that you follow or read have been updated with new posts.  If you follow quite a few blogs it makes it easier to keep up with them under one single account rather than having to check different sites for new blog for updates.  You can now follow my blog with Bloglovin, there is a link on this post and a link on the right hand side of my blog too.  So click away!

I will have a new blog post up soon too!

Follow my blog with Bloglovin

I’m Good Thanks

Hi Folks

Hope you are all well and fellow chronic pain sufferers are as well as to be expected. 

Mental illness cannot be fixed or at least cannot be helped until you say what is going on in your head.   Now many of you don’t know me but,  I was the guy who made everyone laugh was always upto harmless mischief.  I was the guy that got drunk until he was sober and got drunk again,  I was the guy that when anyone asked how I was I replied, “I’m good thanks” .  I was the guy that wasn’t telling the truth,  not because of a desire to be dishonest but because of a desire to protect and being completely truthful, I didn’t want anyone to think I was weak.  

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Now that I am in a wheelchair, spending a lot of my time at home, I find myself having too much time to think.   I think a lot about my Mum who, when I was 2 years old, died of a brain hemorrhage.   I think about all the good times I’ve had and experience guilt because she isn’t here to experience these times with me. 

I struggle with lots of different feelings like guilt or replaying images in my mind of different things I’ve experienced. For example, I’ve seen a mate killed right before my eyes,  I think of him, and how he died often, and I find it difficult to put into words the complex feelings I have surrounding it all.  My mind constantly goes back and forth between things that happened when I was growing up or my experiences in the army and I get overwhelmed.  All this baggage is making my life hell.  I sometimes despair at this and hate myself for the life I have given my wife,  a young woman who works her arse off and then has me to look after, and cook and clean for. On top of this she also has to listen to me moan about how hard life is with Chronic Pain. 

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I live each day with these complex feelings and find it difficult to identify the constant whirling emotions. I feel guilt, hopelessness, despair, fear, anguish,  I am depressed and last month I finally asked for professional help.  Asking for help was difficult and it has taken many years for me to do it. What was even more difficult to hear upon speaking out was them saying that if I didn’t get help, that would ultimately end up resulting in my death. Difficult because as I said, I am the guy that likes to say I am OK.    Medication isn’t the only answer ,  but things should move forward soon, things can only get better?

Now I know some of you might read this and think I am writing this for attention,  I’m not, it would be far easier for me to continue to just keep telling you all.. “I’m good thanks!”   I wrote this in the hope someone reads it and says if he can admit he needs help then I can too.   I recently met a guy a few months ago and we have become really good mates. Becoming friends with someone who has accessed mental health services and says it with no apologies made me realise that I too could do this. Asking for help is not a sign of weakness. It’s a sign of strength, opening up and trusting a professional stranger to help you at your most vulnerable is difficult and by sharing my story I hope that someone, somewhere grows strength from this and reaches out for the help they too need.

Cheers for reading and soon I hope to tell you all how successful my treatment has been. 

Jamie

Pain… It is Nasty

Good Morning folks

First of all I hope that you are all as well as can be expected. 

When pain increases it doesn’t do it gradually it just increases.   The usual pain is bad enough and when it multiplies by another 100 million then it leads to problems.   The problems are endless for example I can’t sleep because of it nor can I hold a conversation or be trusted to remember things. 

We call pain increases FLARES  and at this moment I’m at the start of one and it’s the first one for a wee while.   The problem with a flare is when it starts there is no way of knowing when it will end.   For example  one of my flares lasted over 1 week and I couldn’t sleep for 5 days,  I remember it because of the length of time I never slept.   I try to explain my pain to people when I’m just my normal pain but it hard so I’m not going to try explaining a flare up to you all. 

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Although we sufferers are in pain already I can assure you we know when it’s increased.  It’s not unnoticeable that’s for sure,  I would hope  that this flare moves in pretty fast as I cannot be dealing with this just now. 

This was just a quick wee blog as I wanted to write what I was thinking as I was at the start of my flare.   Please ask questions etc if I don’t answer straight away then I’m not making excuses I’m just sore.  Please also share in Facebook, Twitter carrier pigeon etc. 

Cheers

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Raise Awareness

Hi Folks

I hope that you are all as well as can be and to fellow sufferers who are going through some hard times I’m thinking of you all. 

I write this blog to raise awareness of Complex Regional Pain Syndrome*,  a condition that for a lot of sufferers is life limiting.   When I was first diagnosed with CRPS* I thought that I was the only person on this planet that had this,  even my own GP at the time had to Google it!.   When I started reading things online I quickly realised that the reason I thought I was the only person with it was because it was a relatively unknown medical condition that people knew about.  

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As I told family and friends what I had and what it was going to do to me I quickly realised that they didn’t fully understand the situation nor did I or my wife but we got the basics of it.   Complex Regional Pain Syndrome is a very big deal to a lot of people in this country and around the world,  with no cure and all sorts of medical professionals trying to come up with the perfect remedie to combat this horrible condition.   So with what I knew and what I was going through I thought it raise awareness and in that I’d be explaining to family and friends who were still at the ” you will get better soon”  stage. 

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So I wrote my blog and people read it, then I wrote more each time about how I as suffering and how it was effecting my life.  Not only was I telling people about my medical problems I was telling you all my life story really  as CRPS  became a huge part of life.   I explain the dark times and also my good days,  I would and still do let you all know what im going through at hospital and at home and to this day over 3500 hits have been on my blog here.   Not just here on my blog but I give updates on my twitter and Facebook almost daily.

I don’t say I am having a bad day etc for you all to feel sorry for me I do it so you all can understand what this condition is doing.  Please continue reading my blogs and other social networking sites.

Thanks for reading

Believe In Yourself

Good Morning folks,

I hope that you are all well and pain is low,  to you folks going through the tough times we are all thinking of you. 

Now the first thing that happens when you suffer from Chronic Pain is “is it all in my head?”.   We think this because people we spend our time with, friends, family and work mates who think “it can’t be that bad”  or “you will be OK in a couple of days”.   That is what plants the seeds in our unconscious mind,   you start to become paranoid touching,  pressing,  bashing,  your effected areas just to make sure.   But that’s not enough so you Google it….. Shit I’ve got cancer and going to die in 3 hours…. Not really but Google doesn’t have the answers.   Who has the answers?  Us ourselves,  we know that the burning hot or Ice cold feeling,  the feeling that you have been stabbed by a million pins,  or however you feel when you have the pain. 

Our closest loved ones are the next to believe it as these are the people we live with 24/7  or there abouts.   Finally someone who will listen and who fully understand what is happening to our bodies.  Next it’s friends but wait a minute,  those friends who said  everything will be OK in a couple of days are nowhere to be found.   They didn’t think you were being truthful,  you just didn’t want to go to the cinema that night or to the night club where in reality you were in pain and not slept for a few days.  

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After all this happens it becomes a false environment, well for me it did.  I was like ok I fully believe I am in pain I have Complex Regional Pain Syndrome…. Then I think do I really have this condition?  Go reading stuff on Google going through symptoms, lists of medical advice,  pictures.  Comparing all this to what I am going through,  nah I don’t have this I’m going to get better in a few days (I’ve had CRPS for 30months) I think this because my unconscious mind still has they seeds of doubt from friends whom are now no longer part of my life. 

Reality set in, I sat down, went through everything with my doctor, pain specialist, wife, sister etc.   I have Complex Regional Pain Syndrome and for the time being this is how it is.   There I said it I feel brilliant for it.   I can still do most things in life but I have a serious condition to live with too,  now I have new friends that understand, my family understand and I believe in myself

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Life with this condition or with any form of chronic pain is a roller coaster.  Hold on, but still enjoy life, days are tough at times I know that. 

Cheers for reading, my English is poor I make no apologies for that as at school I was the class clown.  Please share on Twitter and Facebook and feedback is great too.

Off days… Are allowed!

Good Morning folks.

As I start every blog asking you how are you, I will continue with this blog… How are you all??  I hope that those out there who are having tough times get through them ASAP.

Chronic pain is a horrible thing for anyone to deal with,  but to myself, a fellow pain sufferers it’s constantly horrible.   There’s times when we can put a brave face on and face the world,  pretending that yeah I’m Ok. But there is days when that brave face & the pretending can’t be done…. And it’s allowed.

Off days to some of us are seldom but to most of us they are regular. You should not be afraid to have an off day, I mean everyone has one… chronic pain or not! The days off pretending that everything is hunkydoory is only kidding your self on and making people around you say silly thing like… You ok you look fine it can’t be that bad.

I have bad days regularly and I think it’s down to still not accepting what’s going on with this horrible condition. Yes I am depressed, I’m not afraid to say I’m suffering from mental health problems. Some of my off days have been horrible, dark feelings. But now I just don’t do anything on my off days and I mean nothing, is it feeling sorry for myself? Maybe but it’s not a bad thing considering my health problems.

Good days are brilliant I love having a great happy day spending time with my wife doing some hobbies….. Watching TV and going out and about in my wheelchair. The good days well make me forget the bad days for sure, my pain specialist who is the top cat when it comes to helping myself and giving me lots of info (really I can’t take it all in so Jen is my ears) she says to me that if you don’t suffer a bad day with chronic pain then you are doing pretty well in dealing with your condition. And maybe that’s why I have bad days so often that I am not dealing with my condition well. Now I’m trying different things to help me with bad days and it’s doing OK just now.

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Don’t let anyone tell you that you cannot feel down, when people on our Facebook support page are feeling down they let us all know and we all try giving the person encouragement, support, words of advice on different ways of dealing with what’s happening etc.

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Thanks for reading, my next blog will be from a person from our Facebook support page who will be telling her story of how #CRPS has effected her life and health. I’m looking forward to that and anyone else wanna tell their stories get in touch and I will gladly give you a platform to tell your story.

Cheers

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I wasn’t very good at English in school, I was too busy day dreaming about hunting Haggis with my slingshot.

Sleep… What’s That

Good Morning Folks,

I hope you are as well as can be expected,  and those who have been struggling the last wee while I hope that you are getting stronger.

Sleep… What’s That?

To many chronic pain sufferers sleep is something that we all struggle with.   Flare ups as, we call them, is when pain increases and stays like a burning fire for as long as it wants too,  now these can stop us from sleeping for days.   Can you imagine being so exhausted that simple tasks you cannot do?   Being in pain that  is worse than child birth?  Yet we have no sleep for days and still we go on, fighting this pain.   Now from my own personal experiences with no sleep and fighting pain, I can tell you it’s something I wouldn’t wish on my worse enemy.

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The longest my body has kept me awake from fighting pain is 5 days,  now just think about that for a moment.   My pain is horrendous to deal with in any given day but in a flare up, its intensified by at least 1000% and you may think that I’m over exaggerating but I’m far from it.  From hallucinations to crying uncontrollably from pain and pure exhaustion it’s not a nice thing to experience and not a great thing for family and friends to witness.

I am lucky that I have my close family who fully understand what I’m going through and also some friends.   Most of them ask at least once every couple of days if I’ve had enough sleep.  Luckily for myself the 5 days of no sleep has never been back and the longest I have been deprived of sleep recently is 3 days.   Three days is still extreme and takes so much energy out my body due to trying to fight pain too.

When I finally get to sleep then I can sleep for hours and hours but this also has downfalls.   When I sleep it means I miss out on time with my wife,  time with friends and family,  and time just enjoying the day.   Even when I am missing my sleep and fighting pain I miss all of the above and any other sufferer will say the same. I try and have a sleep pattern but flare ups can happen when ever they want, we are at the mercy of this condition. Yes we get medication by the bucket load and you would think it would help but in most cases it doesn’t even take 5% of the pain away.

I’m writing after having no nights sleep, I have very bad pins and needles and I’m having spasms. I’m in bed dancing like Elvis with these spasms!! Now today I will stay in bed and try get some rest and sleep.

Cheers for reading, hope I never sent anyone to sleep…..

Complex Regional Pain Syndrome is an incurable debilitating condition.