Join the Conversation on
20 people
0 stories
3 posts
Explore Our Newsletters
What's New in

Good news - bad news - worse news

Good news - after one year struggle with state health bureaucratic system I'm entitled to new active light wheelchair payed by state. Bad news - usually there is one month waiting list and now is even longer. Badly news - I'm in quarantine hoping not to have high temperature because I'm on Warfarin. #Wheelchairs  #BloodThinner #WheelchairUsers #ChronicSpinePain #Paraparesis   #Happiness #ChronicIllness  #Undiagnosed #Sadness #Spasticity #COVID19 #European #stayhome


From bad to little better to very bad in just 12 days

I have waited several months for physical therapy in rehabilitation center. I dreamed of it because of soaking in sulfur water baths (being in hot water in general), individual medical gymnastics (1 therapist - 1 patient), massages, TENS and other electrotherapies. Previous years it helped me to get some muscles and condition and to feel little better at least for few weeks after.
This year my anxiety is the worst, everything bothers me. The fact I am still undiagnosed after 5,5 years doesn't help. Usually I am mostly at home, in secure environment with my husband who takes care of me and my therapist and best friend – my dog. It was extra big change for me to be in the rehabilitation center with lots of laud, insanely inquisitive people but I promised my husband and myself that I will try to do my best. Unfortunately, after 10 treatments and finally feeling some muscles in good way, I felt sharp pain in my back and right leg. I can tolerate big amount of my pain but this kind of pain… My therapies are stopped and I’m waiting for the appointment in pain clinic. Last time I felt pain like this but in left leg and back I had spine surgery.
Anxiety and depression are now winning. Just few days ago I believed I will soon feel a little better and stronger.
Thank you for reading!
#CheckInWithMe #Undiagnosed #Spasticity #Paraparesis #BackPain #ChronicPain #WheelchairUsers #PinchedNerve #Anxiety #Depression #Arthritis


My story part 1

I have suffered with #Epilepsy since I was 5 years old, but was constantly told I just need more sleep till my sister did her first aid course and had me go see my gp asking for a referral - turned out she was right. I was 13. No medicines worked. We tried countless drugs from the age of 13 onwards but it only carried on getting worse. #JuvenileMyoclonicEpilepsy also #Photosensitive -epilepsy. Then while in college I started getting a crazy #Migraine and eventually regardless of whatever I took nothing would make it go away. So I slept at home for nearly a month. Once it became better and I tried getting out of bed... BAM! Paralysed. I was rushed to hospital and after doing three wrong #LumbarPunctures they found nothing. The worlds best nerve specialist also told me I was lying. -that day, those words... that lady, I will never forget. Going back alittle - I was in hospital for over three months with this now... at the time for some reason I didn’t think anything of it and just got oncwith whatever. Towards the end, with no help from the doctors there, my dad helped me learn to walk again using their frames and crutches when he would come visit. They sent me home with the diagnosis of #Paraparesis and #Parasesis