Ehlers Danlos Syndrome Awareness Month- May 3rd

Today I want to talk about some of the daily limitations of EDS. In this post I am going to do it in a "Day in the life" form

I wake up anywhere between 8am and 1pm depending on what sort of night I have had, how my body  is feeling or what I am doing that day. When I wake up, I can't just jump out of bed. First I have trouble waking up because of the fatigue and how much my body is hurting. Then I have to make sure that all my joints are in place so that I don't crumple when I wake up. Usually I will have 3 to 4 dislocations. You may say "How can you sleep through it" but when you have lived with it your whole life you get accustomed to it and your body lets you sleep through it. This isn't always a good thing because there can be worse pain or damage to nerves if a joint has come out in a certain way. Mum brings me a drink of water because of my Dysautonomia. Then I swing my legs over the side of the bed and sit for a minute and then I finally get up.

Next I go to the bathroom and do a catheter as my bladder no longer empties itself.

Then I have to go and have some breakfast so that I can take my morning meds. Depending on how nauseous I am I will either have a rice cracker or cereal. Most days I don't want to eat but I have to for my morning meds.

After this I will clean my teeth most days Mum helps me with this as it is hard to do with my hands. Then I do my makeup this isn't as easy as it sounds most days i have to take breaks while doing it as my hands hurt, but I love it so I don't stop. Then Mum dresses me, I am not able to do it myself without hurting myself. Then Mum will brush my hair as if I lift my hands up above my head my shoulders will dislocate.

Then we do whatever we have to do for the day. Whether thats doctors appointments or food shopping etc. When I get to wherever I am going I have to decide whether I will use my wheelchair, cane or crutches all of these are kept in the car. Usually our outings are short unless it is Dr's appointments as I tire very easily. Usually when I get home Mum will lay me down to have a rest.

Then when I wake up we do my clean out which can take a bit of time (Does anyone want a full post about my ACE?) Then Mum will give me a shower I am not able to do this myself. Then she will put me in my pyjamas and I will have some dinner. Usually I don't eat a lot of dinner. By that stage I am so exhausted and in so much pain eating is the last thing that I want to do. Then I will take my night time meds and hop into bed. This is usually about six.  I will sleep for a couple of hrs and then a dislocation or pain will wake me up so I will get up and do anything I need to get done and then when Mum gets into bed I hop into her bed. I know it seems strange but it is safer and easier. I am known to stop breathing in my sleep so Mum feels safer (and so do I) when I am with her. I will also wake many times in the night with dislocations and Mum will have to reset them and strap them and give me the appropriate pain medications. Mum doesn't like me being alone after I have taken certain medications.

This is all not including my daily dislocations as that is so unpredictable and also this is without my as needed meds as we never know when or how many of those i will have.

Then I wake up the next morning and do the whole thing over again...

Thank you for reading. Please share this to raise awareness of Ehlers Danlos Syndrome! And remember show your stripes this May in support of EDS!