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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Why being sick is a full time job.

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I have gotten to the stage where I feel as though I have hit a brick wall with regards to my medical conditions. It’s so extremely difficult when you are fighting daily with your body and then on top of this have to fight with medical professionals who have never heard of your conditions, research specialists who do know about them, try to raise money to see these specialists who are not based locally and try to create your own plan. Then we have to explain why these things cannot be done on the NHS and that there is a massive lack of knowledge and that private appointments are not a luxury to us, but a necessity. Explaining to people that there is no cure and no treatments that can just take this all away so that we can live “normally”. Trying my best to raise awareness of these awful invisible illnesses so that others don’t go misdiagnosed until adult life. Being sick is a full time job.

I think back on the days when I would get waken up by my alarm in the morning, quickly hop out of bed, get washed, clean my teeth, get dressed, make the bed, do my hair and make-up, eat my breakfast and then make my way to work and this could be done within an hour and was just a daily routine that I took for granted. Now each of these things is a massive challenge in itself and can take an hour for just one task. Every action I take has to be carefully thought about and thoroughly planned around my conditions. If I make my bed and suffer an injury, such as a dislocated shoulder, will someone be around to help me try and relocate it? Can I really afford to do my hair knowing that it causes me a great deal of pain in my neck/shoulders? Can I risk taking a shower knowing that it may cause me to have a POTS attack and I will have to lie down for the remainder of the day recovering? These are all things that people living with chronic illnesses have to think about each day and are often risks we have to take.

Having to deal with people judging because your illness is invisible is tough. On the outside I may look like a healthy 25 year old woman but on the inside my body tells a completely different story. I often feel embarrassed to leave the house and ashamed to use my walking aids as people stare. I understand that it is human nature and luckily I have managed to block out people staring at me most of the time but it also affects the people I am with and makes them feel uncomfortable. So many people stare when I pull up in a disabled spot, eagerly awaiting to see if I actually have a blue badge, and when I get my badge out and carefully get out of the car with my stick they look away. I don’t mind people looking at me but rather than staring and speculating what could be wrong what I would really like is for someone to take the time to ask me. I would be more than happy to explain about these awful conditions that manifest in all areas of our bodies.

Some days are better than others. Some days, like today, I am exhausted and in lots of pain so struggle to do the smallest of tasks, yet others I can push myself to do certain activities. I struggle hugely with the concept of people judging me on my “good” days. If I have a face full of make up, hair done and I’m dressed nicely people often say to me that I “don’t look sick”. If I manage to do something I enjoy one day and leave the house I am sometimes asked “when are you back at work?” but in reality this is my job. I am sick 24 hours a day, 7 days a week. Unfortunately this doesn’t go away come Friday at 5PM. It doesn’t go away because it’s my birthday or any other day.

Please do not take this post as negative, I just wanted to share some of my thoughts. On the other hand my conditions have made me a much stronger and more mature person. You really appreciate everything so much more, like if someone comes round and makes you a cup of tea it may seem like a small gesture to them but to me it is a huge thing that I am very grateful for. Thank you for reading this. I hope that you are all as well as can be.
Love & Hugs,
Charlie.

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EDS Fact: Number 64

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EDS 63

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EDS Fact: Number 64

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EDS 64

It’s not always black and white! Please share to help raise awareness.

EDS Fact: Number 58

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EDS 58

Hip pain and EDS/HMS.