My 5 happy things this week have been:
1. My exo-skeletal hip brace came a month early and omg it is amazing.
I walked the dogs down the lane (with my parents for the weekend under observation as my meds are changed just in case,) extra dog, cat and bird snuggles have been great. I feel better for having had my pets around me.
I can walk up and down the stairs! As this takes the strain off my legs I am so much more mobile!
2. They don’t think my Seizures are epilepsy. I have a possible but probbable diagnosis of ‘Non Epileptic Attack Disorder’ which is okay. Caused by mental/physical stress and well. Two miscarriages and a chronic illness, it makes sense if it’s stress related.
Emphasising the ‘physical stress’ aspect to doctors/parents as it is when I’m tired/fatigued rather than upset or in full grief mode. Sorta. Just don’t want them to think I’ve turned into a crazy woman! Although they are real, there is nothing I can do to control or stop them (at least for the moment anyway) and I will see a NEAD specialist soon, and have an MRI to make a final diagnosis.
3. Bonus of being back in Norfolk I get to see my partner.
4. Fresh Air!
Love city life (surprisingly convenient) but missed the sky. Less convenient but much prettier.
5. Tomorrow I find out if/where I can get a referral for genetic testing to give a proper EDS diagnosis. Have been warned that they can find other things too that maybe you wouldn’t be prepared for- depending on the level/type of testing, but I will cope with the fall out. I would prefer to know than not know.
So mostly health related this week, and I know I have been absent from blogging/ Instagram for a while, but health being a bit naff and everything the routine has gone to pot. Also have to keep health insta updated so I’m not explaining every 20 seconds what is wrong with me at the moment…
Bit tired of the ‘how are you doing’ question. Well a bit crap but we’ll get there. Been through worse.