Top Tips

First I want to make clear these are not all mine... many people on EDS forums have written these and allowed me to use them. Thanks guys :-)

1. Bowen Therapy- this is one I use and can swear by it though you need a good Bowen therapist
2. Medications- One thing I have to add here is if you need them TAKE them don't not take them because of what other people may say and think.
3. The ocean
4. Pain Sprays
5. Arnica Cream- LOVE LOVE LOVE IT!!!!
6. Dental Splint for TMJ and migranes
7. Family- This is my life line
8. Music
9. Pilates- Be careful with the way you move your joints in this though
10. Gastrolyte- an oral re hydration solution you buy at pharmacies.
11. Memory Foam Mattress Pillow
12. Sorbolene Moisturiser
13 Kindle- many with EDS cannot hold books open for long
14 Naps- I take many naps a day it is something that gets me through
15 Paw Paw cream- for cracked lips
16. Paper Tape
17. Gauze
18. Bandages- to wrap round dislocated joints
19. Wheelchair- without it I just could not do half of the things I do
20. Hand Splints
21. A brilliant doctor
22. Keeping fit with gentle exercise when possible
23. Speech Therapy
24. Dragon Naturally Speaking- to reduce keyboard and mouse use
25. Customized Ergonomic Desk
26. Beanbag
27. Bookseat or pillows to support books when reading
28. Alternating activities- not doing any one activity for too long
29. Only shopping for short periods of time
30. Hot baths to warm up in winter
31. Heat wheat packs
32. Electric Foot Warmer
33. Keeping Hydrated
34. Wrist BP monitor
35. Patience
36. Good Physios
37.Thumb Splints
38. Pacing yourself
39.  Being Organized
40. DVDS
41. Laptop
42. When travelling don't forget that all your medical equiptment can be separated from you.
43. Always travel with a letter confirming your EDS
44. Companion Card
45. Fold up camp chairs instead of plastic chairs

Hope this helps some people

MRI is scheduled

We got a call today that I am now classified as an 'emergent' case. So my MRI has been pushed forward to next Tuesday. It will take an hour and a half so I am to bring music. I am hoping that I will get the results soon. I am still falling and I am finding it harder and harder to get up each time. My body is battered and bruised and I am worried about how much longer my body can take it... at least I have the MRI soon xx

Not Happy Jan

Hi All,

I am having a bad day the drop attacks are still happening multiple times a day. I have been putting on a brave front and acting like its not worrying me and it doesn't matter.. but inside I am scared, more scared than I have been about anything for a LONG time. I am more sore because every time I fall I hurt myself. I have more naps and try hard to keep going. Today my brave front went down. I cried for the first time in a long time. I let my emotions free, a hard thing for me to do.

I worry what the future holds for me... I don't know whether I will get any better but I intend to.
I am focusing more on my physio and I AM GOING TO GET THROUGH THIS!!
Please keep me in your thoughts and prayers

Tests and Gastro

Hi All,

I went to the hospital to see what they think of my falling. At the moment they are at a loss. They are calling them drop attacks but don't know what is causing it or how to fix it. I have had spinal xrays, blood tests, urine samples and need an MRI and a cardio check. So I won't know much for a while. I have fallen 3 times today. I am worried but hoping that they will find an answer soon enough. I haven't updated as I got gastro and was not well

EDSgirl

Update

Hi All,

My toe is doing better! I have an important appointment on Tuesday to see what they can do about my falling. Will update that night... wish me luck
EDSgirl

The Joys of EDS

OK One thing that EDS does is that you don't react to medication the same way that normal people do. Today I had the procedure on my toe and the local didn't take so I felt it all- and my blood didn't clot so it kept bleeding. I am in pain but am OK.
xoxo