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“Life” is Possible Again

Posted Jan 30 2013 2:18pm

The distressful situation in last year made me feel I couldn’t keep going anymore.

Now that I have a knowledgeable treating GP & ME/CFS specialist and Anglicare support that makes it possible to get to the appointments, I’m starting to relax a little about my life. Things didn’t happen over night, but it is gradually building up.

In mid-January, I made a follow up appointment with Dr GD.

Staff at the clinic were all amazingly friendly and helpful. They had patients with walking sticks, walkers, rollators, and wheelchairs. Since the clinic is disability friendly, nobody had to stop and struggle with their mobility equipment. In a way, it amazes me that majority of medical centre are not disability friendly, as in both facility and staff.

I feel that Dr GD and I are still a little cautious about each other, yet slowly building mutual trust. It is nice to see that the quietly speaking doctor’s sense of humour is slowly coming out.

His compassion and knowledge provide comfort. I asked about Ampligen, and he had the answer. He even complimented my question had a good point. I never have to struggle with this doctor for making my question understood or being ridiculed. I had questions that Google didn’t give answer, but Dr GD did.

At this appointment, it was suggested that I double Calcium supplement as it is still low,  try Class 2 Compression Stockings , try D-Ribose again. He gave me permission to increase Fludrocortisone only while the harsh heat weather is here and my blood pressure is low-ish.

I didn’t know that compression stockings have different class. Dr GD smiled.

I haven’t had a chance to go to the Chemist to purchase the Compression Stockings yet. Delivery of D-Ribose left a note at the door that I had to go to Post Office to pick it up. These have to wait until I have my Anglicare support next week to go out.

Increasing Calcium supplement is not a problem. I increased Fludrocortisone, but I had to stop it after two nights because it triggered constant migraine. Ironically, I was rather okay for 3 days with the increased Fludrocortisone because I could sit at the table when I had meals despite of the heat and increased fatigue level.

At this appointment, a plan was made that I see Dr GD regularly from now on. He didn’t want to force it if I cannot cope, but he would like to monitor my progress. And he wants to get me better while we both acknowledge the reality about this illness. With this plan, my distressful situation from last year has ended. Having a doctor who has experience and knowledge about my condition and having a doctor who understands I want to get better are so empowering.

What made it easier for me to agree with the plan is that I now have understanding Anglicare driver who takes me to the appointments. I was happy to hear from the Transport Scheduling Officer that I was going to have this driver with a passenger car so that I can lie down during the trip. On top of it, a staff at the clinic kindly made a phone call to make pick up request on behalf of me.

I was so grateful for this help because phone call can be a tough challenge with my neurocognitive problem, especially when I have to spell out my name (address and telephone number) and/or explain things to a person who has no idea about the situation. And, usually, the person at the other end of the line gets irritated because they cannot hear my weak voice. Then, my brain crashes before I get to the point…

Bonus of having regular appointments is positive interactions with human beings. It helps a lot about psychological status of this isolated and housebound sick person.

The whole experience of this appointment changed the tide for better. I feel this year is going to be a good one.

“Life” is possible again.

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Web link mentioned in the post

Support stockings | myDr

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