Hi All,
I get extremely bad headaches. We still don't know why I am getting these headaches- more and more testing. When I get really bad headaches, like today, I snap at my family who try so hard to help me. I am trying to learn to not snap but sometimes I do and feel awful for it.
Today I am feeling really tired, sore, headachy and irritable.
I wanted to sleep all day but I need to get up early in the morning.
Hopefully tommorow is better
EDSgirl
Saturday, 28 July 2012
Friday, 27 July 2012
Lots Happening
Hi All,
On Wednesday I had 3 doctors appointment. The first was with that wonderful GP who knows about EDS. We were in there for an hour and she made up a care plan asked about how EDS affected me etc. She also said to come to her with any issues physical, or emotional because lets face it. Living with chronic pain is HARD! Even when I pretend I'm fine. Then I had an appointment with second skins to get fitted for new hand splints. I got to the area quicker than expected so I went to the shops for 5 minutes to get something to eat. Well I went in got myself something to eat that was all OK. Then on the escalator a woman she must have been in her 60's ran through and I fell dislocating my collar bone further than usual and my knee- so there I am screaming in pain and she RAN off! Now that is just plain rude. I wouldn't have minded so much if she had have apologized and helped me. She may not have meant to hurt me, but that isn't the point she did and the least she could have done is apologize. There is no way that she didn't know I was hurt. She wasn't to know I have a disability but she could have knocked a small child or an elderly person over just carelessly rushing like that!! Then I still had 2 appointments. I went to second skins and luckily they had a sling as I didn't have one in the car! You would think with someone who dislocates all the time you would have a sling! The appointment went well and they were very very careful not to hurt me more as I was visibly in heaps of pain by the time I got there. Next I had an appointment to get my leg/hip strappings. They fit well and are working well so all happy there. I am also trialing a mattress at the moment- a latex one. To be honest I hate it it is making my pain worse and my sleeping worse than it already is. I have been trialing it since Monday its not working. I am going to trial another one soon so I will keep you all updated as to how they go. Tommorow I am going to meet someone else with EDS so very excited.
Love and Hugs to you all
EDSgirl
On Wednesday I had 3 doctors appointment. The first was with that wonderful GP who knows about EDS. We were in there for an hour and she made up a care plan asked about how EDS affected me etc. She also said to come to her with any issues physical, or emotional because lets face it. Living with chronic pain is HARD! Even when I pretend I'm fine. Then I had an appointment with second skins to get fitted for new hand splints. I got to the area quicker than expected so I went to the shops for 5 minutes to get something to eat. Well I went in got myself something to eat that was all OK. Then on the escalator a woman she must have been in her 60's ran through and I fell dislocating my collar bone further than usual and my knee- so there I am screaming in pain and she RAN off! Now that is just plain rude. I wouldn't have minded so much if she had have apologized and helped me. She may not have meant to hurt me, but that isn't the point she did and the least she could have done is apologize. There is no way that she didn't know I was hurt. She wasn't to know I have a disability but she could have knocked a small child or an elderly person over just carelessly rushing like that!! Then I still had 2 appointments. I went to second skins and luckily they had a sling as I didn't have one in the car! You would think with someone who dislocates all the time you would have a sling! The appointment went well and they were very very careful not to hurt me more as I was visibly in heaps of pain by the time I got there. Next I had an appointment to get my leg/hip strappings. They fit well and are working well so all happy there. I am also trialing a mattress at the moment- a latex one. To be honest I hate it it is making my pain worse and my sleeping worse than it already is. I have been trialing it since Monday its not working. I am going to trial another one soon so I will keep you all updated as to how they go. Tommorow I am going to meet someone else with EDS so very excited.
Love and Hugs to you all
EDSgirl
Monday, 23 July 2012
An average day
Hi All,
I thought it might help if I explain what an average day is like for me
I wake up- between 7 and 11am- it really depends on the sort of night I have had and whether or not I have to go out. I have to put several joints back in where they have come out overnight. Then I get some breakfast (my nausea is worse in the mornings and when I am eating). After breakfast I may or may not bring whatever I ate back up. If I do bring it back up it dislocates my jaw and leaves me with a headache and sore throat for the rest of the day. Then I may lay down for a while. I then will get dressed- I try to find clothes that are loose fitting and easy to get on. I will pop joints out while doing this. I then have to do my hair BIG CHALLENGE- I usually get someone else to do it as it is really painful for me to do it and my shoulders come out. After that it depends on what I do during that day. At lunch and dinner the nausea isn't as bad and I don't usually vomit but I can do. After dinner I usually do what I have to do and tidy up a bit around the place. Then I get into bed, watch some TV, use the laptop and read a bit. The day takes a lot out of me and although I often have naps during the day by night time I am exhausted and in heaps of pain that the pain killers don't do much for. I haven't put evertything here. I have other things I do such as physio, doctors appointments, washing, cleaning etc that causes problems as well. I also wake up 5 or 6 times a night in pain. I can sometimes get only 2 hours of sleep at night and still have to go about my day to day life. It is hard to get through things somedays and the day I am describing is a GOOD day! Somedays the pain is so bad I can't get out of bed and the nausea so bad I can't eat. I hope this gives you an insight into my life.
EDSgirl
I thought it might help if I explain what an average day is like for me
I wake up- between 7 and 11am- it really depends on the sort of night I have had and whether or not I have to go out. I have to put several joints back in where they have come out overnight. Then I get some breakfast (my nausea is worse in the mornings and when I am eating). After breakfast I may or may not bring whatever I ate back up. If I do bring it back up it dislocates my jaw and leaves me with a headache and sore throat for the rest of the day. Then I may lay down for a while. I then will get dressed- I try to find clothes that are loose fitting and easy to get on. I will pop joints out while doing this. I then have to do my hair BIG CHALLENGE- I usually get someone else to do it as it is really painful for me to do it and my shoulders come out. After that it depends on what I do during that day. At lunch and dinner the nausea isn't as bad and I don't usually vomit but I can do. After dinner I usually do what I have to do and tidy up a bit around the place. Then I get into bed, watch some TV, use the laptop and read a bit. The day takes a lot out of me and although I often have naps during the day by night time I am exhausted and in heaps of pain that the pain killers don't do much for. I haven't put evertything here. I have other things I do such as physio, doctors appointments, washing, cleaning etc that causes problems as well. I also wake up 5 or 6 times a night in pain. I can sometimes get only 2 hours of sleep at night and still have to go about my day to day life. It is hard to get through things somedays and the day I am describing is a GOOD day! Somedays the pain is so bad I can't get out of bed and the nausea so bad I can't eat. I hope this gives you an insight into my life.
EDSgirl
Sunday, 22 July 2012
Awareness, Health and Sadness
Hello to all,
I just wanted to say that I am trying to raise as much awareness as possible for EDS. Please get your friends to like and share my facebook page facebook.com/EDSAWARE
Also can those reading this please have a look!
On my health- my hip is very sore today as I did too much yesterday so today I had a 'crash' day and didn't do very much! I am hoping to see my doctor soon. Also we found a new doctor that knows about EDS which is always a bonus!! It is hard when you have a GP that doesn't understand a lot about your condition especially when it is as dangerous as EDS.
On the illness being dangerous, it really is. Another with EDS died a few days ago who didn't have vascular and had been married just 6 days before. She was on her honeymoon :( When you are at the prime of your life you should have no fear of dying. With this condition it is a blessing just to wake up in the morning, even when you know that you will be in pain all day. Many doctors are misinformed and think that Vascular EDS is the only type that kills. This young lady's death has just brought home how easily my life could be taken away. So I will leave my life in God's hands.
Love to all,
EDSgirl
I just wanted to say that I am trying to raise as much awareness as possible for EDS. Please get your friends to like and share my facebook page facebook.com/EDSAWARE
Also can those reading this please have a look!
On my health- my hip is very sore today as I did too much yesterday so today I had a 'crash' day and didn't do very much! I am hoping to see my doctor soon. Also we found a new doctor that knows about EDS which is always a bonus!! It is hard when you have a GP that doesn't understand a lot about your condition especially when it is as dangerous as EDS.
On the illness being dangerous, it really is. Another with EDS died a few days ago who didn't have vascular and had been married just 6 days before. She was on her honeymoon :( When you are at the prime of your life you should have no fear of dying. With this condition it is a blessing just to wake up in the morning, even when you know that you will be in pain all day. Many doctors are misinformed and think that Vascular EDS is the only type that kills. This young lady's death has just brought home how easily my life could be taken away. So I will leave my life in God's hands.
Love to all,
EDSgirl
Tuesday, 17 July 2012
Bursitis
Hey all,
Last time I posted I mentioned my hip popping out. I now have bursitis in the hip which was so painful I was ready to go to the hospital but I waited it out. My doctor has upped my medication and it seems to be helping.
Once I am feeling better I will post a little more
EDSgirl
Last time I posted I mentioned my hip popping out. I now have bursitis in the hip which was so painful I was ready to go to the hospital but I waited it out. My doctor has upped my medication and it seems to be helping.
Once I am feeling better I will post a little more
EDSgirl
Sunday, 15 July 2012
SURPRISE!!
Hi,
Over the weekend I spent time with my friends, was feeling very sore but I had a great time with them and it was all worth it. Then last night I got up and went to the kitchen... I ran into a chair, fell over and popped my hip out! I was feeling very sore and sorry for myself. My aunty is an artist and she had painted me a zebra and put it in a frame for me :) She also made copies so that I can put them in cards to sell with my facebook page and the other things I sell. I am very happy and she cheered me up and we had a nice visit together as well.
EDSgirl
Over the weekend I spent time with my friends, was feeling very sore but I had a great time with them and it was all worth it. Then last night I got up and went to the kitchen... I ran into a chair, fell over and popped my hip out! I was feeling very sore and sorry for myself. My aunty is an artist and she had painted me a zebra and put it in a frame for me :) She also made copies so that I can put them in cards to sell with my facebook page and the other things I sell. I am very happy and she cheered me up and we had a nice visit together as well.
EDSgirl
Tuesday, 10 July 2012
My Knee
Hi,
Last time I posted about a lot of pain in my knee, it has got down over the past few days. I had a doctors appointment yesterday anyway so I got him to check it just to be safe and I have overstretched some tendons and ligaments. I do that rather often. I am glad it is nothing more serious and it was just the initial pain that was so bad. It is improving a lot and I will be back on my feet soon enough! The doctors still can't figure out what is wrong with me so I am being sent to an endocrinologist
EDSgirl
Last time I posted about a lot of pain in my knee, it has got down over the past few days. I had a doctors appointment yesterday anyway so I got him to check it just to be safe and I have overstretched some tendons and ligaments. I do that rather often. I am glad it is nothing more serious and it was just the initial pain that was so bad. It is improving a lot and I will be back on my feet soon enough! The doctors still can't figure out what is wrong with me so I am being sent to an endocrinologist
EDSgirl
Saturday, 7 July 2012
Pain Pain Pain Pain Pain
Hi All,
I have done something stupid to my knee. Different to anything I have ever done before. I was walking and there was a clunk and a thud and heaps of pain. I can walk on it a bit but it is really sore (baring in mind that I have walked on a broken foot) So I am worried if it is still really bad in the morning I may have to get it checked out...
UNIVERSE STOP TESTING ME PLEASE!!
Goodnight all
I have done something stupid to my knee. Different to anything I have ever done before. I was walking and there was a clunk and a thud and heaps of pain. I can walk on it a bit but it is really sore (baring in mind that I have walked on a broken foot) So I am worried if it is still really bad in the morning I may have to get it checked out...
UNIVERSE STOP TESTING ME PLEASE!!
Goodnight all
Wednesday, 4 July 2012
30 Things you may not know about my invisible illness
1. The illness I live with is: Ehlers Danlos Syndrome
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Learning to pace myself and learning to not feel ashamed
5. Most people assume: That I put it on
6. The hardest part about mornings are: Getting out of bed and getting ready because I have bad nights
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My TEN's Machine
9. The hardest part about nights are: Getting comfortable and sleeping through the night!
10. Each day I take _36_ pills & vitamins.
11. Regarding alternative treatments I: Go to Bowen Therapy and take vitamins
12. If I had to choose between an invisible illness or visible I would choose: I don't know there are pros and cons to both
13. Regarding working and career: I work from home when I am well enough
14. People would be surprised to know: That I am scared of chickens!!
15. The hardest thing to accept about my new reality has been: The fact that my body lets me down and it will continue to do so
16. Something I never thought I could do with my illness that I did was: Sandboarding
17. The commercials about my illness: There is no advertising
18. Something I really miss doing since I was diagnosed is: Being Normal or at least not seeming sick
19. It was really hard to have to give up: Dancing and Acting
20. A new hobby I have taken up since my diagnosis is: Scrapbooking
21. If I could have one day of feeling normal again I would: Live it to the fullest!
22. My illness has taught me: That I need to laugh at my situation.
23. Want to know a secret? One thing people say that gets under my skin is: "But you don't look sick"
24. But I love it when people: Surprise me by saying that they know what EDS is and help me and don't judge me
25. My favorite motto, scripture, quote that gets me through tough times is: "Worrying does not empty tommorow of its troubles it empties today of its strength" Corrile Ten Boom
26. When someone is diagnosed I’d like to tell them: That things will get better, they need to laugh and find new things in life
27. Something that has surprised me about living with an illness is: Is that even though I need to take a lot more time to do things it doesn't mean that I can't get them done eventually. And also the exhaustion you feel at times
28. The nicest thing someone did for me when I wasn’t feeling well was: Come to visit me with flowers and hot choclate and marshmallows
29. I’m involved with Invisible Illness Week because: I want to raise awareness
30. The fact that you read this list makes me feel: Glad
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Learning to pace myself and learning to not feel ashamed
5. Most people assume: That I put it on
6. The hardest part about mornings are: Getting out of bed and getting ready because I have bad nights
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My TEN's Machine
9. The hardest part about nights are: Getting comfortable and sleeping through the night!
10. Each day I take _36_ pills & vitamins.
11. Regarding alternative treatments I: Go to Bowen Therapy and take vitamins
12. If I had to choose between an invisible illness or visible I would choose: I don't know there are pros and cons to both
13. Regarding working and career: I work from home when I am well enough
14. People would be surprised to know: That I am scared of chickens!!
15. The hardest thing to accept about my new reality has been: The fact that my body lets me down and it will continue to do so
16. Something I never thought I could do with my illness that I did was: Sandboarding
17. The commercials about my illness: There is no advertising
18. Something I really miss doing since I was diagnosed is: Being Normal or at least not seeming sick
19. It was really hard to have to give up: Dancing and Acting
20. A new hobby I have taken up since my diagnosis is: Scrapbooking
21. If I could have one day of feeling normal again I would: Live it to the fullest!
22. My illness has taught me: That I need to laugh at my situation.
23. Want to know a secret? One thing people say that gets under my skin is: "But you don't look sick"
24. But I love it when people: Surprise me by saying that they know what EDS is and help me and don't judge me
25. My favorite motto, scripture, quote that gets me through tough times is: "Worrying does not empty tommorow of its troubles it empties today of its strength" Corrile Ten Boom
26. When someone is diagnosed I’d like to tell them: That things will get better, they need to laugh and find new things in life
27. Something that has surprised me about living with an illness is: Is that even though I need to take a lot more time to do things it doesn't mean that I can't get them done eventually. And also the exhaustion you feel at times
28. The nicest thing someone did for me when I wasn’t feeling well was: Come to visit me with flowers and hot choclate and marshmallows
29. I’m involved with Invisible Illness Week because: I want to raise awareness
30. The fact that you read this list makes me feel: Glad
Tuesday, 3 July 2012
Busy, Busy, Busy
Hi,
My health has still been going downhill so I had a whole lot more tests today. Hopefully I will get the results of them on Monday. Besides being busy with my own health, I have been busy with making awareness products. I have over 30 orders!! Looks like I will be needing more ribbon. I am really enjoying making these products and I am glad that people want these. I am just covering my costs and any profit that I do get goes to Ehlers Danlos Syndrome charities. I have been busy but have been enjoying it so much and it definitely doesn't feel like work.
EDSgirl
My health has still been going downhill so I had a whole lot more tests today. Hopefully I will get the results of them on Monday. Besides being busy with my own health, I have been busy with making awareness products. I have over 30 orders!! Looks like I will be needing more ribbon. I am really enjoying making these products and I am glad that people want these. I am just covering my costs and any profit that I do get goes to Ehlers Danlos Syndrome charities. I have been busy but have been enjoying it so much and it definitely doesn't feel like work.
EDSgirl
Monday, 2 July 2012
Trying to do my bit to raise awareness
Hi Guys,
It has been a few days but I have been tired and busy. I am now selling awareness items on facebook. I have made ribbons, magnets and keychains. If you are interested please go to http://www.facebook.com/pages/Ehlers-Danlos-Syndrome-Awareness-Products/258260627609061
I have had so many orders and I am thankful to the people that have ordered. I am having a lot of fun doing it. The keychains are coming :)
EDSgirl
It has been a few days but I have been tired and busy. I am now selling awareness items on facebook. I have made ribbons, magnets and keychains. If you are interested please go to http://www.facebook.com/pages/Ehlers-Danlos-Syndrome-Awareness-Products/258260627609061
I have had so many orders and I am thankful to the people that have ordered. I am having a lot of fun doing it. The keychains are coming :)
EDSgirl
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