Make the most of the good days ♥

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Hey everyone,
Sorry I’ve been pretty quiet recently, I’ve been busy with appointments and my end of year uni assessment. I’ve now completed my first year of my psychology and counselling degree and I just hope that I pass so I can go on to study my next module after summer! I’ve been resting up when I need to and trying to make the most of my good days by spending time with my family and friends.
Not going to lie, I have been struggling quite a bit with exhaustion and fatigue but I just have to listen to my body. It gets annoying because I try to tell my body to do something simple and it’s actually like it’s laughing at me like “not today sunshine”! Luckily most of the people in my life are really understanding if I have to cancel plans or I am having a bad day. It gets hard putting on a front every single day and pretending you are okay, in fact it’s pretty exhausting. Good news is my surgery wounds are all healed nicely! Anyway, hope you are all okay. Sending love and hugs xoxo

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EDS Fact: Number 84

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EDS 84

Collagen. That pesky protein!

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Ehlers-Danlos syndrome is known to affect collagen in the body, but how does this affect those who have it and why? Here are some facts about the pesky protein:

  •  Collagen is the most abundant protein in the human body and is an important componant of connective tissues.
  • It acts as the glue that holds our body together so if it’s faulty then it can be a huge problem!
  • It forms a scaffold to provide strength and structure in our bones, skin, muscles and tendons.
  • Collagen molecules are a triple helix and are made up of three long polypeptides. These are then coiled together which makes it strong and flexible.
  • Collagen makes up one third of the protein in the human body.
  • It is needed in the replacement and restoration of dead cells.
  • As we get older we produce less collagen.
  • There are at least 16 different types of collagen.
  • Collagen can be found in all connective tissues all the way down to blood vessels and organs.

As you can see collagen is relevant in most of the body so for people with connective tissue disorders, like Ehlers-Danlos Syndrome, it can cause huge problems!

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http://www.livestrong.com/article/78360-collagen-functions/

Believe in yourself!

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The past 12 months has been full of ups and downs. I have formed new relationships, had relationships break down, moved house, started a degree and many other memorable things. Sometimes I feel as though it is important to look back and reflect on what has changed and what I’ve actually achieved. I guess that day by day things don’t seem to change but when you look back everything is different.
 There is no doubt that having a chronic illness can put a lot of strain on romantic relationships. I had a romantic relationship break down last year. The relationship started before my condition began to deteriorate and before I was actually diagnosed with Ehlers-Danlos Syndrome and this brought me a great deal of guilt. I guess that I felt as though I had somewhat tricked my partner at the time because he started building a life with a healthy-ish young woman who went to work, went out with friends and was able to do fun stuff and then years later, during my lowest periods, was stuck with a very sick person who could hardly leave the house. I think I started blaming myself for the breakdown of the relationship but looking back I was and I am still me, just a slightly different version! If people can’t see that then it is their problem,
For a while I lost myself. I didn’t want to see anyone. I didn’t want to do anything. I felt extremely low and I thought that life couldn’t possibly get any better. I felt trapped in my body and couldn’t see a way improving things but I did. I managed to turn my life around somewhat and yes, there are still lots of things that aren’t perfect but I have been able to change some things for the better. I believe in myself now. I have discovered that a bad day doesn’t have to be a bad week. I have come to terms with the fact that some days I am going to feel better than others and yes, it is very frustrating that I can’t do some of the things I enjoy doing but I have realised that there are still things that I can do!
I think that acceptance is one of the most difficult things to deal with when being chronically sick. It is hard to accept that you might not have a day when you are “pain free”. It is hard to accept that you may not be able to do some of the “normal” things like work 9-5. My dreams of travelling, having a family, running a marathon etc. may have to change slightly but I have accepted that and realised that it doesn’t mean it won’t happen, I may just have to go about things differently. I have lost some people through getting sick but I have also met some amazing people and realised who is really there for me. I am so thankful for the people that see me for who I am, Charlie the music loving gig-junkie, rather than Charlie who is sick!
I guess the point of this post is just to say don’t give in. Don’t let anyone take you for granted. Don’t let anyone make you feel like you owe them something because you are ill. Don’t let people treat you differently. If someone judges you then it speaks more about them that about you. Follow your dreams. Believe in yourself. I believe in you!

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Update.

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On Friday I had surgery to have the Sacral Nerve Stimulator fitted permanently. I’m feeling very tired and sore but I guess this is to be expected! The team were fantastic and made sure they were extremely careful when positioning me because of my joints. I didn’t recover well from anaesthetic but that seems to be the norm for me. Yesterday I had the device turned on, however it is going to take a while for my body to settle down and to know if it is working correctly or not. I am due to see my specialist nurse again in two weeks time and fingers crossed everything will be okay. My wounds are looking well so far with no sign of infection so fingers crossed it stays this way! All in all I am feeling positive and hope that the device is successful!
Love & Hugs, Charlie xoxo

Update…

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Hey everyone,
Sorry for the lack of posts recently. I’ve had a lot going on recently but I’m going to try and start posting again more frequently. So as you may know, last year I had a sacral nerve stimulator fitted and the trial period proved successful but unfortunately I developed an infection in the wound and the device had to be removed. Since then I have been struggling a lot with infections again and now have a nasty infection which has passed to my kidneys. I was admitted to hospital last week but unfortunately I am still struggling with it. They now know the type of infection so hopefully I can be sorted out with the correct antibiotics. I have my pre-op in a few weeks so that I can hopefully have the permanent implant fitted.
On Friday I had an appointment in Manchester for a small bowel manometry but unfortunately the test couldn’t be carried out due to my naughty stomach playing up. They couldn’t get the catheter to pass from my stomach to my small intestine as it just kept on bouncing off the sides of my stomach, guessing this is due to my stretchy connective tissues. They weren’t happy to keep trying as there is a risk of perforation but I’m hoping my Doctor can think of another way to complete the study. I made the most of my time in Manchester and managed to have a nice time with my friend. I guess sometimes it’s nice to try and escape from reality for a few days, even if I had to take my EDS and other conditions with me.
Hope that you are as pain free as possible and have had a nice weekend!
Love & hugs, Charlie xo