I had a very positive Specialist appointment at end of May. After that, my whole body system has been in chaotic struggle due to post appointment PENE. I’m still in bad PENE, but I can now feel this will pass as long as I keep resting as much as my body needs.
The meeting with the Specialist was so productive that it was worth for the horrible PENE. I now have a ME Specialist, official diagnosis of Myalgic Encephalomyelitis (ME) separately from Chronic Fatigue Syndrome (CFS), and am waiting for an appointment confirmation from a Cardiologist Clinic. It makes me a little hopeful about my life and future.
Too many things happened on the appointment day. So, I’m going to tell little at a time.
When I made an appointment, there was about a month waiting, which wasn’t too bad and I needed the time. I prepared little by little towards the appointment by completing questionnaire and preparing documents to mention the things I feel important.
Transport was organised through my local GP. My kind long distance friend and her family understood the importance of the appointment and my paranoia about the transport get cancelled at the last minute. They provided moral support by committing to be my back-up transport if some unfortunate event happens to prevent me from showing up to the appointment. I’m just so grateful for their understanding and support.
I couldn’t sleep two nights prior to the appointment. I woke up with the hit-by-a-truck phenomena on the day, and remembered I was having this weekly basis these days. I didn’t put this in the preparation consideration…
When a driver from Senior Citizen’s Centre knocked on the door, I wasn’t ready. I panicked and begged him to give me 10 minutes. He wasn’t happy, but reluctantly agreed. I’m afraid he thought I just got out of the bed. The truth is that I had been trying to get ready for the last two hours through the sickness, weakness, clumsiness, extra-slowness and light-headedness with frequent rests in between.
I was very upset with myself. Knowing the importance of the appointment, I shouldn’t have failed to get ready in time. How pathetic I am… At the same time, I know I did my best to be ready in time as much as my body allowed…
The driver knocked on the door the second time. This time, he was just telling me he was going without me. I’m coming! I’m ready! I quickly grabbed a towel to prevent the dripping water from my hair from making mess in his car. The towel turned out to be a life-saver by protecting me from the strong perfume smell from the fellow passenger and blocking extra strong sun light pierced through my sunglasses.
The driver told me that I shouldn’t go today since I was sick. I said “No! No! No! I MUST go today because I am sick! I’m always sick! This appointment is very important to me! (Please take me!)” I thought about my friend’s family, but I dismissed the thoughts as it was too late to ask as it would take almost 2 hours for her to get here. The driver asked if I had a family to take me. I just shook my head. I have nobody… If I had a family to take me to the appointment, I would have seen the Specialist long time ago… I was horrified with the thoughts that he was about to tell me he wouldn’t take me today.
He saw how distressed, how desperate, and how sorry I was. I was almost passing out from all the stress and ill feeling. It was still my non-functional hour and usually I’m still resting in my bed now. But, I was determined to see the Specialist today!
He suddenly became very kind and compassionate. His change of heart overwhelmed me and made me nearly in tears. He calmed me down by assuring that he would take me to the Specialist and I didn’t need to worry about anything. I was so grateful and humble for his understanding. I couldn’t walk up the drive way, and he kindly supported me to get to the car. I should have accepted his offer of pushing me in wheelchair at the first place.
I was hoping to be as horizontal as possible in the car. But, my hope was quickly disappeared. There were two more passengers and he picked them on the way. Once I told him that my real appointment time was 2:30 pm, instead of 2:00 pm the driver realised he was doing okay with the time. Other passengers were members of the Senior Citizen’s Centre, not the referral from Ambulance Office. They paid a small fee for the transport. I wondered if I could directly ask for the transport service like they do. I sometimes need help to go out to have errands done. They all have to wait until I find an assistant.
After he dropped the other passengers at different hospitals, we were heading to my Specialist’s Clinic. I was very ill, weak, had overwhelming nausea, and was holding a sick bag, just in case I puke without warning. From time to time, the driver asked how I was doing and cheered me up.
Finding the Clinic and parking place were difficult. I told him that we could park at the nearby shop building as the Clinic had told me. But he didn’t understand what I was trying to say. Probably, my voice has became too weak for him to catch.
We drove around the block and back to the Clinic street and found a spot quickly this time. Shifting into the wheelchair was a little challenge as I lost all strength while in the car. The driver took care of everything, and all I had to do was just sitting and staying in the wheelchair. I had also lost the sense of direction and alignment in the car and I wasn’t sure if I was actually sitting or floating.
He pushed me into the Clinic and made sure I was okay. We were greeted by a friendly receptionist.
I apologised him again for not being ready in time. He assured me that it was okay. I also thanked him from bottom of my heart. I wish I could express how grateful I am and how much I appreciate, but it’s just impossible. He wished me all the best and reminded me to phone their office when I finished.