My life has changed so much in the last 12 months, I used to keep this blog up to date with what had been going on in my life but I've neglected it. Although I love writing; Turning what's been going on with my life into words hasn't been a priority.
I always forget that writing it all down makes me feel a little better, clears my head and sometimes helps me solve issues. I used to write a diary because of this, I couldn't possibly write that much by hand now though.
I find it hard to express things about my illness and found blogging the easiest way.
The only difference with making it public is that I feel like I need to explain myself all the time. Prove myself. I also have to hold back... A little self restraint never hurt anybody though.
I hope that one day I feel like explaining myself isn't necessary, however... That does all depends on the people around me.
This time last year I was getting ready to go to Egypt with my boyfriend for my 24th birthday. January and February are always my least favourite months of the year but last February has to be the best yet.
The holiday was a lovely little escape, I even managed to do some snorkeling. Snorkeling has always been one of my favourite things to do, however leading up to my diagnosis I found I couldn't do a lot of the hobbies I loved anymore. Snorkeling being one of them as swimming is very painful for me now, if not impossible.
The Red Sea was great that day, although I couldn't explore the coral reefs as much as I'd have liked to, floating up on the surface with my snorkel on was so relaxing, I felt like me again. It was just me and the fish.
I didn't even care that I could have been munched by a great white shark at any point! The heavy amounts of sea salt made it a lot easier to be mobile in the water. Again, I felt I needed to add that little fact in for the people that don't believe/make me feel inadequate because of my condition.
Sadly I think this was the last time I participated in an activity like that. I was so happy that I managed to paddle around almost independently but also in a way feel ashamed.
The shame comes from me constantly wanting people to understand my condition. It's hard to explain that I can do some things but not others. The affect my condition has on me does fluctuate, I guess, in the same way people's understanding of it does.
Just 10 minutes in the sea left me worse for wear for the rest of my holiday, simple things become difficult because of this.
Unless you have the condition or something similar you'll never understand. Every day I have to use my muscles and energy sparingly. I have to prioritise what activities are more important. If I want to go out for dinner tonight, I won't frantically spring clean all morning. Stuff like that.
Unfortunately this is where everyone gets confused. It's hard to get your head around I know, I live with it!
People tend to dislike things they don't understand and that's something else I have to deal with every day.
My condition makes people dislike me.
March was suddenly upon us and the opportunity of moving out of London came.
My Mum found two attached houses in Yorkshire. The idea being, one for myself and my boyfriend the other for her and her husband.
Medically I'd been deteriorating as was expected, I needed a fresh start elsewhere. So did my boyfriend. In London you'd be lucky to be offered a seat on a bus even if you only had one leg, up here people say good morning to strangers whether you have one leg or two heads, it's another world!
Hobbling around with or without crutches throughout the last 4/5 months in Yorkshire I've been offered a seat more times than all of the 24 years I spent in London.
Peoples manners and attitude in London stinks, I hope it doesn't spread up here.
We exchanged contracts for both houses and moved in by August.
We're still there and VERY HAPPY.
I even managed to start up my own online business, it's not a full time wage packet but it's keeping me busy and my brain is actually doing something other than worry now, I thought getting a small business up and running would stop the negative comments and attitudes from the 'Misunderstanders' but no, I've now realised they'll never be happy, even if I am actually doing the best I can in a really crap situation. They will never be happy.
I've been made to feel guilty for having a boyfriend. I actually started to believe it myself until I woke up and smelt the coffee. Why should I be made to feel like I should be alone and single just because of the medication I take? The people with that opinion are sicker than me.
If you generally love someone, seeing them happy and loved by another human being should be enough.
White, black, disabled or abled, it shouldn't matter.
The Red Sea was great that day, although I couldn't explore the coral reefs as much as I'd have liked to, floating up on the surface with my snorkel on was so relaxing, I felt like me again. It was just me and the fish.
I didn't even care that I could have been munched by a great white shark at any point! The heavy amounts of sea salt made it a lot easier to be mobile in the water. Again, I felt I needed to add that little fact in for the people that don't believe/make me feel inadequate because of my condition.
Sadly I think this was the last time I participated in an activity like that. I was so happy that I managed to paddle around almost independently but also in a way feel ashamed.
The shame comes from me constantly wanting people to understand my condition. It's hard to explain that I can do some things but not others. The affect my condition has on me does fluctuate, I guess, in the same way people's understanding of it does.
Just 10 minutes in the sea left me worse for wear for the rest of my holiday, simple things become difficult because of this.
Unless you have the condition or something similar you'll never understand. Every day I have to use my muscles and energy sparingly. I have to prioritise what activities are more important. If I want to go out for dinner tonight, I won't frantically spring clean all morning. Stuff like that.
Unfortunately this is where everyone gets confused. It's hard to get your head around I know, I live with it!
People tend to dislike things they don't understand and that's something else I have to deal with every day.
My condition makes people dislike me.
March was suddenly upon us and the opportunity of moving out of London came.
My Mum found two attached houses in Yorkshire. The idea being, one for myself and my boyfriend the other for her and her husband.
Medically I'd been deteriorating as was expected, I needed a fresh start elsewhere. So did my boyfriend. In London you'd be lucky to be offered a seat on a bus even if you only had one leg, up here people say good morning to strangers whether you have one leg or two heads, it's another world!
Hobbling around with or without crutches throughout the last 4/5 months in Yorkshire I've been offered a seat more times than all of the 24 years I spent in London.
Peoples manners and attitude in London stinks, I hope it doesn't spread up here.
We exchanged contracts for both houses and moved in by August.
We're still there and VERY HAPPY.
I even managed to start up my own online business, it's not a full time wage packet but it's keeping me busy and my brain is actually doing something other than worry now, I thought getting a small business up and running would stop the negative comments and attitudes from the 'Misunderstanders' but no, I've now realised they'll never be happy, even if I am actually doing the best I can in a really crap situation. They will never be happy.
I've been made to feel guilty for having a boyfriend. I actually started to believe it myself until I woke up and smelt the coffee. Why should I be made to feel like I should be alone and single just because of the medication I take? The people with that opinion are sicker than me.
If you generally love someone, seeing them happy and loved by another human being should be enough.
White, black, disabled or abled, it shouldn't matter.
My boyfriend is always telling me he'd love me even if I didn't have legs, I just wish everyone had a kind heart like that. The world would be a better place.
I haven't really made the latest development in my medical history public yet as those who I will refer to as the 'Misunderstanders' have made me feel ashamed of it.
I could think of a much better rude name to call them but I will remain a decent person unlike them.
I might as well just get on with it, their opinion shouldn't matter to me.
I now have a wheel chair. It's not that much of an ordeal for me, it's actually making life a lot easier, literally the only reason I am being shy about mentioning it is because of the people that have made me feel like I am not worthy of love or companionship because of an illness. That I bring my boyfriend no prospects being ill, that he's wasting his life on someone like me... This is all before they even know about the chair.
As I said before, I have to keep telling myself that people with opinions like that are a lot sicker than anyone who has to use a wheel chair, I constantly remind myself I am the better person.
I don't know if the use of a wheelchair is forever, it all depends on how strong I can get my already over used muscles.
I am working on a post now about my first day out in the chair, before I did that though I had to get all of this off of my chest. It didn't go too bad, I've only had one negative experience.
I really do hope no one else is ever made to feel inadequate because of a disability by 'Misunderstanders', it's not a nice position to be put in.
I don't think I will ever not care what people have to say/think as I am naturally a caring person. I do however know that with every day that passes I get stronger regarding all of the negativity and bitterness that is being thrown my way.
I know I am not the one in the wrong, I have nothing to be ashamed of, never have, never will be.
I haven't really made the latest development in my medical history public yet as those who I will refer to as the 'Misunderstanders' have made me feel ashamed of it.
I could think of a much better rude name to call them but I will remain a decent person unlike them.
I might as well just get on with it, their opinion shouldn't matter to me.
I now have a wheel chair. It's not that much of an ordeal for me, it's actually making life a lot easier, literally the only reason I am being shy about mentioning it is because of the people that have made me feel like I am not worthy of love or companionship because of an illness. That I bring my boyfriend no prospects being ill, that he's wasting his life on someone like me... This is all before they even know about the chair.
As I said before, I have to keep telling myself that people with opinions like that are a lot sicker than anyone who has to use a wheel chair, I constantly remind myself I am the better person.
I don't know if the use of a wheelchair is forever, it all depends on how strong I can get my already over used muscles.
I am working on a post now about my first day out in the chair, before I did that though I had to get all of this off of my chest. It didn't go too bad, I've only had one negative experience.
I really do hope no one else is ever made to feel inadequate because of a disability by 'Misunderstanders', it's not a nice position to be put in.
I don't think I will ever not care what people have to say/think as I am naturally a caring person. I do however know that with every day that passes I get stronger regarding all of the negativity and bitterness that is being thrown my way.
I know I am not the one in the wrong, I have nothing to be ashamed of, never have, never will be.
