Wednesday, 11 April 2012
Wedding
Here are some photo's of Scotney Castle, in Kent. We went there last year and it was gorgeous! So pretty and sunny! And there was loads of lush flowers, the gardens were kept really nice! It is just a really lovely romantic place. I think I want to get married here when I'm older haha lol that's probably a bit sad, deciding stuff like that already! I guess, when you are sick, you spend a lot of time, in bed, thinking. So I have thought about things like jobs, marriage and kids. Hope you are all well xxxx
Tuesday, 10 April 2012
Energy and CAMHS
Hey:) attached a good picture, things not to say to someone with ME.
So exhausted. Had a CAMHS appointment at 9:30 this morning and didn't get out till 11:30. I'm not sure it really helped the M.E seeing as CAMHS doesn't deal with stuff like that. But hopefully they will help with my anxiety. I'm not entirely convinced with some of the stuff they said but a few things made sense.
The other day I was thinking about how I used to be and I would like to share with you, one day that I experienced two years ago. Here's the story:
I was in year 8 at school and had a trip to Horniman Art Gallery and Museum in London. That morning, I got up about 7, got dressed, had breakfast, the usual. I walked 10 mintues, to the bus stop and got on the bus to school. The journey took about 20-25 minutes. On the bus, I met my friends, we chatted and laughed. When I got off the bus, I walked down the hill, 5-10 minutes to school. Once at school, we waited around a bit and the teachers took the class register. We got on the coaches and the journey to the art gallery took about 100 mins (1 hour 40 mins), again, on the coach, I chatted with my friends, listened to my iPod etc. When we got to the museum, we went round an aquarium, museum, art gallery, gardens etc. I think we stayed about 5 hours and did a fair bit of walking, taking notes and answering questions. The journey back to school took about the same amount of time as it did to get there. We arrived back at school and walked up to the bus stop to catch the bus. Once on the bus, me and my friend Lois took the 30 minute journey back to her house. Once at her house, we watched TV, did homework and had dinner. Then we went with her mum and sister to the local community centre/working mens club. Her mum was part of Slimming World and we usually went with her, sat in the next room, playing pool and drinking coke with our other friend Eleanor. I'd go home about 8:30, shower and then bed! It seems so much compared to what my body allows me to do at the moment! Hopefully I will be able to manage stuff like that again soon!
So exhausted. Had a CAMHS appointment at 9:30 this morning and didn't get out till 11:30. I'm not sure it really helped the M.E seeing as CAMHS doesn't deal with stuff like that. But hopefully they will help with my anxiety. I'm not entirely convinced with some of the stuff they said but a few things made sense.
The other day I was thinking about how I used to be and I would like to share with you, one day that I experienced two years ago. Here's the story:
I was in year 8 at school and had a trip to Horniman Art Gallery and Museum in London. That morning, I got up about 7, got dressed, had breakfast, the usual. I walked 10 mintues, to the bus stop and got on the bus to school. The journey took about 20-25 minutes. On the bus, I met my friends, we chatted and laughed. When I got off the bus, I walked down the hill, 5-10 minutes to school. Once at school, we waited around a bit and the teachers took the class register. We got on the coaches and the journey to the art gallery took about 100 mins (1 hour 40 mins), again, on the coach, I chatted with my friends, listened to my iPod etc. When we got to the museum, we went round an aquarium, museum, art gallery, gardens etc. I think we stayed about 5 hours and did a fair bit of walking, taking notes and answering questions. The journey back to school took about the same amount of time as it did to get there. We arrived back at school and walked up to the bus stop to catch the bus. Once on the bus, me and my friend Lois took the 30 minute journey back to her house. Once at her house, we watched TV, did homework and had dinner. Then we went with her mum and sister to the local community centre/working mens club. Her mum was part of Slimming World and we usually went with her, sat in the next room, playing pool and drinking coke with our other friend Eleanor. I'd go home about 8:30, shower and then bed! It seems so much compared to what my body allows me to do at the moment! Hopefully I will be able to manage stuff like that again soon!
Wednesday, 21 March 2012
ME
'M' and 'E' are two perfectly normal letters.
Non-threatening.
Just two out of a possible twenty six.
Put them together.
ME. Me, myself and I. Me. A harmless word. Meaning 'yourself'.
A word used everyday.
But
Add a full stop. A period, in the middle. Separating them, that's when they become dangerous.
And they have the power to change your life forever.
M.E.
Myalgic Encephalomyelitis.
Saturday, 10 March 2012
GlamSticks
I was reading my mums Take a Break magazine this afternoon, saw this story and thought I'd share it with you!
'Super Sticks'
"I loved being a teacher and life was always busy. Then I was diagnosed with ME. I had to give up work, and leaving the house was a struggle. When I did, I hated using my dull crutches.
I came across a packet of rhinestones in a drawer and had an idea. I stuck them on my crutches and added glitter. People complimented me on my crutches and it gave me a boost. It got me thinking.
Soon after, a box of crutches was delivered. I painted and varnished them and cover them in crystals.
Then I set up a company called GlamSticks. Customers came to me, embarrassed to go out with their crutches, and left feeling fashionable and confident. Last year, I won an award for GlamSticks. They've featured in two fashion shows and have been auctioned for charity. I'm proud to be transforming the lives of those with disabilities"
Debbie Deboo
I thought this was great! Not only do you hardly ever read a story about ME in a magazine but to read a positive story about ME, is just amazing! I think that Debbie is very inspiring and has done really well!! She should be proud of herself! You can follow her on twitter @GlamSticks
Thanks for reading
Love and hugs xxxx
'Super Sticks'
"I loved being a teacher and life was always busy. Then I was diagnosed with ME. I had to give up work, and leaving the house was a struggle. When I did, I hated using my dull crutches.
I came across a packet of rhinestones in a drawer and had an idea. I stuck them on my crutches and added glitter. People complimented me on my crutches and it gave me a boost. It got me thinking.
Soon after, a box of crutches was delivered. I painted and varnished them and cover them in crystals.
Then I set up a company called GlamSticks. Customers came to me, embarrassed to go out with their crutches, and left feeling fashionable and confident. Last year, I won an award for GlamSticks. They've featured in two fashion shows and have been auctioned for charity. I'm proud to be transforming the lives of those with disabilities"
Debbie Deboo
I thought this was great! Not only do you hardly ever read a story about ME in a magazine but to read a positive story about ME, is just amazing! I think that Debbie is very inspiring and has done really well!! She should be proud of herself! You can follow her on twitter @GlamSticks
Thanks for reading
Love and hugs xxxx
Wednesday, 7 March 2012
Wheelchairs and hospitals
For the last 4 or 5 months, I've been thinking about hiring a wheelchair from the Red Cross. I think it would help me be able to go out more and enjoy life. Hopefully it would make me more independent!
At the moment, the only time I go out the house, is to the doctors! About 3 weeks ago I tried to go to Asda but only managed to be in there 20-30 minutes before I had to go and sit down in the car.
My legs have been bad for about a year now. The first time I had any problems with them, was April 2011. I woke up one morning and I couldn't feel them at all. I struggled out of bed, got dressed and went to school. It was really hard to walk. If you imagine, not knowing whether your feet are on the floor or not because you can't feel them! I was in a wheelchair all day at school and I still couldn't feel them when I got home. I ate my dinner and dad decided to ring the NHS helpline. I spoke to a really nice nurse who asked me lots of questions. At the end of the phone call, she suggested I go to A&E.
We arrived at A&E about 9pm, me and my dad. I had a blood test (I nearly passed out and I had a panic attack) and the nurse checked me over, about midnight.
They couldn't find anything wrong.
So we waited another 2 hours in A&E and then they send me along to the childrens ward. Another doctor checked me over but still couldn't find anything wrong. They said they wanted me to stay the night but I had a panic attack and said that I wanted to go home. They agreed and said that I should go home, get some sleep and come back at 8 the next morning.
The next morning, I came back and they did loads of tests on me again. Still nothing wrong.
At 11am, my dad went to the hospital shop to get me something to eat and some magazines. I feel asleep and when I woke up I was really confused. Where was I? Where was this strange place? Why was i on my own here?
I had another panic attack and I can't really remember much but a nurse had to give me an oxygen mask thing to put over my face. Dad came back and mum came to visit me. Another doctor came to check me over. Still nothing wrong. They sent me home.
Since then, I have been getting severe pain in my legs, as well as numbness and other symptoms. I can't walk too far and I think a wheelchair would improve my quality of life. I get really upset and frustrated that I can't go out and do things.
I have spoken to mum about hiring a wheelchair and at first, she wasn't too keen and explained all of the negatives to me, but I am sure about this. I have thought long and hard about the positives and the negatives.
I am a bit worried that people will stare and ask questions but I guess I'll just have to deal with that when it comes to it.
I would only use this wheelchair when I go out, once a week or so. I won't use it round the house because I want to use my legs as much as I can.
I haven't spoken to dad about this yet but hopefully he will see how this can help me.
At the moment, the only time I go out the house, is to the doctors! About 3 weeks ago I tried to go to Asda but only managed to be in there 20-30 minutes before I had to go and sit down in the car.
My legs have been bad for about a year now. The first time I had any problems with them, was April 2011. I woke up one morning and I couldn't feel them at all. I struggled out of bed, got dressed and went to school. It was really hard to walk. If you imagine, not knowing whether your feet are on the floor or not because you can't feel them! I was in a wheelchair all day at school and I still couldn't feel them when I got home. I ate my dinner and dad decided to ring the NHS helpline. I spoke to a really nice nurse who asked me lots of questions. At the end of the phone call, she suggested I go to A&E.
We arrived at A&E about 9pm, me and my dad. I had a blood test (I nearly passed out and I had a panic attack) and the nurse checked me over, about midnight.
They couldn't find anything wrong.
So we waited another 2 hours in A&E and then they send me along to the childrens ward. Another doctor checked me over but still couldn't find anything wrong. They said they wanted me to stay the night but I had a panic attack and said that I wanted to go home. They agreed and said that I should go home, get some sleep and come back at 8 the next morning.
The next morning, I came back and they did loads of tests on me again. Still nothing wrong.
At 11am, my dad went to the hospital shop to get me something to eat and some magazines. I feel asleep and when I woke up I was really confused. Where was I? Where was this strange place? Why was i on my own here?
I had another panic attack and I can't really remember much but a nurse had to give me an oxygen mask thing to put over my face. Dad came back and mum came to visit me. Another doctor came to check me over. Still nothing wrong. They sent me home.
Since then, I have been getting severe pain in my legs, as well as numbness and other symptoms. I can't walk too far and I think a wheelchair would improve my quality of life. I get really upset and frustrated that I can't go out and do things.
I have spoken to mum about hiring a wheelchair and at first, she wasn't too keen and explained all of the negatives to me, but I am sure about this. I have thought long and hard about the positives and the negatives.
I am a bit worried that people will stare and ask questions but I guess I'll just have to deal with that when it comes to it.
I would only use this wheelchair when I go out, once a week or so. I won't use it round the house because I want to use my legs as much as I can.
I haven't spoken to dad about this yet but hopefully he will see how this can help me.
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