Hi again! As I was reading through the comments that were let on my last post one in particular really struck a cord with me. So I’ve been thinking about it and the more I thought about it, the more I knew I had to post about it. Before I go on though I have a few more pictures from the trip, that will be placed throughout the post. The comment that was left was having to do with pride and not allowing it to stand in your way. When I was in Disneyland we had a lot of walking to do, something that isn’t easy for me. So I could have let my pride stand in the way and just toughed it out all week. However I had to set that pride aside and allow myself the option to get some extra help if I needed it.
Now as it turned out because of how crowded it was I found it easier to walk for short distances and then sit and take breaks. I feel I did a good job of letting my wife know when I couldn’t keep going and when I could. This is something that isn’t always easy to do as others of you may know who struggle with disabilities. Our pride often stands in our way and becomes a wall that proves to be hard to get around. Its been an area that I’ve had to pray about and ask God to help me in getting past. At the start of all of this it wasn’t easy to admit that I needed help in various ways. My pride was one of the things that often stood in the way.
Slowly I started to break down that wall and get myself to a point where my pride wasn’t as big an issue. There will always be times where you will want to do things on your own or push yourself too hard just to do things without help. However you need to be able to give yourself a break and admit that sometimes you might need a little extra help and that you can’t do it alone.
I’m not at all saying that this is easy to do at all because it really isn’t. However if you humble yourself and give yourself permission to receive help then it’s going to be a lot easier to get through each day. It’s all part of accepting things for the way that they are. So I have a challenge for some of you out there who struggle in this area. Allow yourself to set aside your pride and see what happens. I promise you that you’ll start to knock down that wall that that may be standing between you and moving forward!
Hi everybody I’m finally back from holiday, needing another holiday to recover from that one. After two days of travelling to get home I finally have enough energy to put a post together. My girls had the time of their lives, and even I was taken back to my childhood in a lot of ways. Every way we turned we were running into the characters of Disney and there were so many different highlights to the trip. One of the greatest moments though had to be when we were watching the Disney Parade. My five year old daughter turned to my wife and said “this really is the place where all your dreams come true!”. It was one of those moments that you’ll never forget.
One of my concerns when we set out on this trip was how I was going to do with all the walking that you have to do at Disneyland. I went prepared to rent a scooter if I had to but found it easier just to take frequent breaks, sitting where needed along the way where I needed to. With the crowds being the way that they were it was a lot easier to do it this way. As I got to the last day I could tell that my body was starting to tell me that I’d done enough, so I’m really happy that we went for the length of time that we did. If we had stayed any longer then I would have found it difficult to keep going. I paced myself well through this trip. With all distractions I’m sure it helped me in keeping my mind away from the pain.
Overall I felt good and that my CRPS wasn’t stopping me from doing the things I wanted to do. Really what it comes down to is that I feel as though I had control over the CRPS and not it having control over me. I was able to enjoy a family holiday and not spend the entire time in pain or wondering if what I was about to do was going to set off my condition. A lot of that was knowing my limitations and staying within them. You have to find a piece within yourself to know when to say enough and stop fighting your own mind. I went in to this trip saying to myself that I wasn’t going to push myself to hard and that I wasn’t going to let pride stand in the way.
There are too many highlights to the week to mention but one that can’t go without mention was when my eight year old daughter challenged me to going on the Tower of Terror. Let’s just say that it never happened! Yes! I’m a wimp but something doesn’t sound so appealing about dropping 10 stories in about 5 seconds. It seems as though I have a real thrill seeker in Emily because she also wanted to be on California Screamin which is a roller coaster that turns you upside down. I did manage to find it within myself to take my daughters on Dumbo which is more my speed!
It was a great week filled with memories for a lifetime and I’m glad for the most part that the pain stayed under really good control. Now it’s time to get back into routine and start with a hectic schedule once again. So I’ll talk to you all in a couple of days and I hope to get caught up on some of your blogs out there as well. I’ll post some more pictures of the trip in my next post as well.
As your reading this post I’m either busy trying to hunt down Mickey Mouse or I’m laying by the pool enjoying the California sun! That’s right I’m enjoying some much needed time away with the family and won’t be returning for a week. So if a few days go by and you don’t see a post please check back again. I’ll resume posting once I get back. With everything that I’ve been through in the last several months I just find that there’s a serious lack of energy to get through every day. I’ve been having a really hard time with this issue and not being able to sleep very well hasn’t been helping that issue.
I’ve mentioned before that with CRPS one of the things that comes along with is difficulty in sleep patterns. Now since my surgery I seem to get a little more broken sleep but it’s never very good. On an average night I maybe get 3 or 4 hours of broken sleep. What I mean by broken sleep is that I never get into REM sleep. When I am able to get any sleep I can usually count on walking up five or ten times. Usually what happens is that my body stays awake until it just gets to that point where it can’t take it anymore and it just has to shut down.
A lot of people don’t understand that this is all a part of CRPS and that most of us can’t remember the last time we had a great sleep with a solid eight hours of sleep. I could take sleeping pills but the effects that they have on my body just don’t make it worth taking them. Half the time they make me feel a whole lot worse so it’s not worth taking them. Not to mention that the pain usually ends up waking me up anyway, and it’s just adding to all the pills I’m already taking. It really ends up being a pros and cons decision and there end up being more cons than there are pros!
So as a result of the lack of sleep my body has had to adapt to living with less sleep than it should be getting. I wish it was different but this is the way it is at the moment. My daughter asked me yesterday if I’d had any dreams to which I answered “no” and that I couldn’t remember the last time I had a dream. Sleep to some people may be seen to some people as something that really isn’t all that important. To me it’s one of those small things that I’d love to have back. For now I continue to do relaxation therapy to get myself relaxed enough to sleep. Sleep is one of the things that hopefully over time the implants will help me with. Until then I try to do the best I can! See everyone soon!
Well the countdown is on! Only four more sleeps until we get to leave and begin our Disneyland adventure, for a week of magic with the kids. There have been a couple of close calls where the kids have almost found out, but so far they don’t know where they are going. It’s going to be a great holiday and our family needs this time on our own just relaxing and having some fun. It’s been a really hard year with the stress of my surgeries and just the adversity that the entire family has had to endure over the last year.
This trip is about the kids and they deserve to have some fun and get lost in the magic of Disney. I want this to be a time where they can’t stop laughing or having fun seeing as that is what visiting Disneyland is all about. I can hardly wait to see the look on my youngest daughters face when she sits down and has lunch with the princesses. I’m sure it will be the highlight of the trip for her. I’m going to do my best to put the pain and health issues behind me as best I can. The reality is that it will be next to impossible to do that, however I can do my best to minimize the amount it affects me.
My pain over the last couple of days hasn’t been all that great. My neck and where they went in between my shoulders has been bothering me to the point that I’m waiting to hear back from the implant clinic to see what they suggest I do. It’s hard to say why the pain has been worse over the last couple of days. I need some fast relief before we go. It’s so very frustrating because up until now things have been great and the pain has been under control. Oh well! I’m sure that spending some time in a nice pool and a hot tub along with the hot California sun will help bring me some relief!
This will be my first trip with all the new implant hardware in my body so I’m getting ready to set off all the alarms at the airport. I’ve been told that I need to prepare myself to be delayed a little longer than I’m used to. I’m hoping that things go smoothly and that I don’t run into to many obstacles at airport security. My understanding is that they are starting to get a lot better with people who have implants. I say load me into the full body scanner and get things over quickly from the start! Any way you look at it this should be an experience!
I’m really hoping that I come back refreshed and full of great ideas to blog about because I really feel like I’m needing a break at the moment. When I get back I’ll be sure to post the pictures of the girls and the looks on their faces when we tell them. We plan of video taping the moment we tell them. I hope that everyone has a Happy Easter and I’ll talk to you all very soon!
First of all I have to apologize to everyone for the length of time between post. I’ve been trying for a few days to put this together but it’s been busy and I haven’t been feeling my best as of late. It was a busy week and because of that I’m sure that’s why I’m not feeling as good. My pain as well as some of the other symptoms have been worse and so I’ve needed to slow things down a bit. The last few days the pain at the various surgery sites where the surgery had been done has been bothering me, so that has probably set things off as well.
I don’t know why but for one reason or another this post has been really difficult to put together. One of the reasons is that I’ve been very foggy in the head the last few days and it makes things a lot more difficult to put together. It’s the reality of this disease though and I’m not prepared to let it slow me down and stop me from overcoming CRPS. Without a doubt the implants have helped no question! However they aren’t a cure and I’m still going to have days where I find it hard, and today is one of those days.
I’m having a hard time with my concentration today and trying to put together a sentence. However I’m bound and determined not to let this disease defeat me. This is where I dig in my feet and fight even more so that I can win this battle. According to the word of God I have already won this battle and so I find strength in those words. I have come too far and taken back too much to be defeated now.
The message is pretty simple today, and so I’m telling you I’m having a tough day. We live with a disease that sees us up one day and down the next. I’ve made a choice in all of this not to stay down and defeated but to rise up against all of this and show you that it can be beat. You need to know that that none of this would be possible without having God do all the work that He’s done in my life. Tough days are going to happen along the way on your journey as well, and you have to soldier through them and then start moving forward again. I look forward to the day that I can write that one post that says I have no pain, and that I have full use of my limbs again!