Big Day Out

 

On Tuesday the 15^th, I met online friend Zarii for first time.

This plan came all the sudden as she was coming to the mainland for a few days. I had concentrated outings (all for medical reasons) during the week; therefore I was very nervous about making this plan come true.

But who could resist such an exciting opportunity?! I didn’t mention this to you before because I didn’t want to jinx the plan. You all know the curse of ME/CFS, I assume. Whenever we make a plan, somehow we get too ill to make it happen.

We had exciting ideas of place to meet. But I had to cool my head to check the reality and it ended up at my local Tavern behind Shopping Plaza. It is very boring and dull, but it’s the only place I could survive. This place is less than 5 minutes drive from my place, so we could come back to my place if we get weak during the meeting. And if we got ourselves in unwanted emergency situation, my Medical Centre is in the premises. This is a quiet place comparing to other exciting and fun shopping centres, which I would prefer if I am not ill.

I had spirometry test (lung test) the day before. It didn’t go well. I struggled badly to produce one strong breath out and I almost crashed during the efforts. (I will post about the experience later.) It destroyed all my energy and strength. The way I was during the test, payback would be very bad…

I woke up in the morning with sleep paralysis and heavy fatigue. By the time, I could force my body out of bed; it was too late to cancel the meeting. Zarii would be on her way to meet me. The idea of standing her up horrified me. I did my best to get ready as quick as possible. But my quick was still very slow. I hated myself for not being able to be on time.

When I got there, I was still feeling heavily fatigued and feeling overwhelmingly guilty of being late. Since I never been inside of the Tavern, I had no idea where to find her even it was my suggestion. I didn’t have strength to pull wheelchair out from car boot, but I didn’t think I could walk all the way to the entrance. I started feeling miserable and didn’t know what is the best thing to do.

Then I heard a soft voice said “hello”. I turned around to find a gorgeous woman in a wheelchair. She had this happiness energy and it lifted my energy level straight away. She was dressed in fashionable clothes and shoes with cute bag, and had a make-up on. She was as gorgeous as I imagined. And she has gorgeous British accent as I imagined. (I have sweet spot on British accent.) I remembered to hug her gently as she has other health challenge apart from ME.

She helped me to take wheelchair out from my car. While I was getting the chair ready, she gave me some tips of using wheelchair (as I only got my wheelchair a week before.) and gave me her old cushion to keep me comfortable.

So we started heading towards the entrance of the Tavern. And it was my very first upwards slop since I got my wheelchair. It was nice to have someone with me when I challenge something I’m not sure of making it. She is an experienced and fast wheeler. By the time I finished one push on wheels, she was miles in front of me and patiently waiting for me with smile.

She cheered me up and said I would gain strength in my arms from pushing wheels. I hope it is true. The way my muscles work, they only lose strength when I use them more. When I grip on something, my first try is the strongest one. And if I continue the same action, eventually I lose grip all together. Then I need to rest muscles long enough before I regain the strong grip. Of course, this could be hours if not days.

When I reached at the top of slope, she gave me orchid bouquet. I was overwhelmed by her kindness and consideration. It should have been me who give a gift as she was the one drove all the way to meet me and even had to wait for me. She even gave me dog chew for Poppy and Basil. We had met for 10 or 15 minutes by then, and she was already spoiling me big time. She really made me feel on top of the world.

When we went inside, she zoomed her way around to find out that they serve coffee for free from machine. And their cappuccino is not real one. But nothing could ruin my excitement and happiness of meeting this wonderful online friend.

We made our way to veranda section where looking over a huge park. A kind attendant carried our coffee to the table. Later, we found the veranda is the designated smoking section.

It was fascinating to observe her wheelchair. She has backpack at back of her chair and special under seat bag to carry valuables. She has wheelchair cushion and nice sheep skin through to keep her comfortable. On flames and arm rests, she has stickers of frangipani flowers and butterflies. Her wheelchair had inherited her pleasant personality.

It wasn’t only me who was fascinated by her wheelchair. A little boy kept touching and poking her chair and we couldn’t really chat to each other by the destruction. So we decided to check out the mall and see if there is another place we could be left alone quietly.

She zoomed. I try hard to follow her with snail speed. She often had to stop and wait for me. But her smile was genuine and it was nice to have such a pleasant company.

She went into my Medical Centre and asked about transferring her medical records and making appointment with my GP. I know it is a very long trip for her to see Dr TL and it requires great efforts just to see him. But her GP is not helping at all and she is getting really frustrated and desperate to have someone who would listen and help her. One of the reasons she came to mainland was to see a specialist to have her skin checked. I felt outraged when I she told me later how she was insulted and no medical support was offered despite they were talking about very serious medical condition and she paid very expensive fee. If I had the same condition with her, all I need to do is to speak to Dr TL, and everything will be taken care of with respect and support.

While I was listening to her asking questions to receptionist, I couldn’t stop feeling how lucky I am and was thanking this universe for giving me such an excellent doctor.

Then we moved on. We noticed a new age shop. We wheeled inside the shop to look around. I was screaming inside, “Oh Boy! This is fun. I’m actually doing window shopping with a friend.” If it was physically possible, I would be jumping up and down with joy and dancing on the table as well.

The next stop was Chemist as Zarii needed to get strong painkiller. The usual pharmacist wasn’t on duty, but friendly shop assistant was there to help us. She was very happy for me to have a day out with friend who shares same medical condition. Probably because she is the one who had to listen to how desperate and horrible life I am living when my long distance friend M had to come and rescue me few times, she pays extra attention and care whenever I’m in the shop.

After that, we wheeled all the way to the other end of the mall. Then, we tried to decide where to have coffee and lunch. There are two diners in the mall. And they would have a real cappuccino. But something in the mall was annoying my ear. I guess it was some kind of motor humming but couldn’t really tell. And when we entre one of the diners, I noticed their fridge was too noisy for me. If it was a day I wasn’t so ill, I could cope with it. But on my bad days, it exhausts me greatly and quickly when I try to separate my friend’s voice from back ground noise.

When I try to explain this to healthy people, they just make face and tell me I am just being difficult or exaggerating symptoms. Surely, it shouldn’t be THAT bad, they would say. But today, I am with a person who also lives with ME. It was so great to have a company who understands and agrees. So I said good bye to real cappuccino without hesitation.

We decided the veranda of the Tavern wouldn’t be too bad noise wise. We just had to wish people on the veranda would leave us alone.

Zarii zoomed away. Then stopped and wait for a snail. Finally, we wheeled the upwards slop back to the entrance of the Tavern.

Their kitchen had not much variety for us to choose from. Maybe, I’m just a fussy eater. But I didn’t feel like eating much. The fatigue makes eating great effort. So I choose toasted sandwich. This time, I tried to shout to her as she had been spoiling me and I had nothing to give back to her. After determined and friendly arguments, she ended up shouting me. She even organised another free coffee while I was struggling manoeuvring between tables & chairs back to the veranda.

Kitchen hand who brought our sandwich whispered that we were not supposed to eat at the veranda. It made us little paranoid. But we couldn’t move or carry our food and drink somewhere else. So we decided she was not trying to kick us out but gave us a friendly warning. It might something to do with strict health regulation at Tavern that people shouldn’t eat where smokers are around.

It was so nice to chat with her. We chat about symptoms, activism, attitude and all things about ME and not ME. We chat about our lives and dreams. We chat about relationships and so on.

When Zarii stood up to stretch her legs, we cried out “Oh, It’s a miracle!” and giggled.

Some drunken men tried to get our attention and tried to buy us beer. But other than them, we had reasonably quiet and pleasant time together.

I felt my energy level plunged. I realised that my time was ending soon. Considering how I was at the beginning of the day, I was doing amazingly well. I was sure that the pleasant and accepting Zarii’s attitude performed little bit of miracle for me. I put my legs on one of chairs and tried to get as horizontal as possible. I wished so much that this would not end. I was having great time. But Zarii needed to pick her boyfriend up soon. If she wouldn’t have to go, I would have invited her back to my place and we would be continuingly chatting about everything until we pass out.

We started wheeling ourselves back to car. While we were packing wheelchair, I remembered I had a camera with me. I tried to take some photos of us. My brain was losing its function. I couldn’t see the camera screen well enough to see if they were good photo or not. Sun was just too strong for my eyes. I wish I had remembered the camera much earlier, and then I would have much nicer photos of us. But I was enjoying the day too much and didn’t want anything to interrupt it.

Zarii helped me again to load my wheelchair into my car boot. I was so grateful for her efforts and willingness. I knew very well that she was struggling as well. But she drove all the way to come and see me in my neighbourhood. She organised lovely present for me and my dogs. She helped me with food and coffee while I just sit in my wheelchair and do nothing. And she gave me such a wonderful day, which I hadn’t had for years.

It was difficult for me to finally say good bye to her. We hugged each other longer than when we met. I was wishing we could do this again. And I was wishing I would be stronger next time.

I could crash on the spot. But I pulled my last energy and drove home. It is only 5 minutes easy drive for me, but Zarii had to drive long distance in busy traffic. I don’t know how she could do it, but I couldn’t stop thanking her for her great efforts to make this happen. Despite of the exhaustion, my face had big smile and it didn’t disappear for very long time.

Beautiful orchid reminded me of the amazing time I had with Zarii. And Poppy and Basil finished her present very quickly with happy smile on their face. I was so grateful that my body made it to meet her.

I am hoping that we could do this again. But I want me to be better next time so that I wouldn’t strain her too much.

If you want to be friends with Zarii, just visit her MIMES (Macleay Island ME Support) page.

I will try to post photos when I’m up to.