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Such Life with ME/CFS

Posted Jun 24 2008 5:06pm


After the payback from the hospital visit, I’ve been going through bad flare up. So my mind is not in the right place at the moment.

I wish I could see a face of ME/CFS. And I wish ME/CFS is tangible. So that I can shake it, strangle it punch it, and destroy it. (Where do I get the strength from? I don’t know.) Sometimes it is hard not to have anything to blame. I wish I could blame someone for my sufferings. But there is really nobody I could clearly blame on. The only word I can describe the reason why is “unlucky”.

I probably need to have a good cry. Sound of “this is not the end of the world” and “this shall pass again” are sounding more pathetic to my ear…

I know it very well that I should prioritise and pace my everyday tasks. But reality is…, if I pace myself, none of essential task will get done. Since there is nobody I could rely on, I just have to do things by myself. If I stick with my ideal prioritise and pacing, I can never get the essential tasks done. So I have no choice, but have to decide to get things done.

I can get things done at one go effectively, rather than small bits of pacing that doesn’t get anywhere. When I decide to do something challenging, my body seems to produce (something like) adrenaline energy. And once it gets started, it doesn’t shut down until it all used up. So I take advantage of this dysfunctional energy. Theoretically, I shouldn’t do this because it will cause severe payback or I even end up with progress in overall severity.

But as usual, I have no other option.

Since MS was mentioned at the Neurologist appointment, I checked on some MS websites. If I use their severity scale, I would be 8.5 out of 10. And they have long list of practical, financial, community support for MS suffers. I am assuming they can receive this service if their severity is less than 8.5 or they have carer who looks after them. It DID make me feel this world is unfair. But what can I do? Suffering is suffering. I am happy for them that those services are available and help ease their sufferings little better.


I needed to fill prescriptions. I needed to do food & grocery shopping at Supermarket. I needed to do these last week. But the bad flare up kept me in bed with all fun symptoms. Chemist will deliver medicines if they are for emergency. But my medicines are not for life or death situation. I could use online grocer. But they don’t stock everything and they are not cheap. Since money is getting very tight, I prefer to use online shop mainly for emergency. On top of that, the shopping list of items that I cannot get from online shop was only getting longer and longer. Since my fridge and freezer were almost empty, the urgency of going to the Supermarket was getting higher.

I tried “this is not the end of the world”, but there is so much I could take this survival mode life style.

This Wednesday, I had doctor’s appointment. I was not sure if I could make it. But I needed to see my GP to organise Ambulance Transport for coming Monday. I really should not miss the appointment.

I had to go out anyway, so I decided to take this opportunity to do long due shopping.

So I made this plan.

I start getting ready around mid-day.

I leave home around 3 pm.

I go to Chemist and fill all prescriptions I needed.

Then, I go to Supermarket to get basketful of non-perishable items.

Then I leave items in my car, and head to Medical Centre for 4:40 pm appointment.

After the appointment, I will go back to the Supermarket and get frozen vegetables, meat, and other cold items.

Then, I go home and prepare myself for severe payback. And hope that I shall somehow get well enough for Ambulance pick up on Monday morning.

Perfect plan! I started working on my will power the day before. And hoped it would all work out.


Things never go as I planned these days.

By the time I drove to the Shopping Plaza and assembled my wheelchair, it was already the time to check in to the Medical Centre. According to my plan, I would have been to the Chemist and done the first basketful of shopping… *sigh*

After the appointment, I went to the Chemist. Then, headed to the Supermarket.

While I was filling the little red plastic shopping basket, I came up with this idea. I was going to leave the filled basket at the checkout counter, then keep on with the second basket. When I finished the second basket, I’ll pay for the items. Then I carry the half of the items to my car, then come back and carry the rest of items.

Well, don’t ask me why I didn’t have this idea before… But I felt it was good shopping strategy for me. The extra trip back and force between the Supermarket and my car will take more energy, but it is much better to do just one basketful of shopping, and then go through another frustration of wondering when I could go out again to do the shopping I am desperately needed, while the shopping list is ever getting longer than ever.

Staff at checkout counter was confused by my request of leaving items, but they didn’t refuse it.

I slowly wheeled back to my car for the first half items. Then, slowly went back for the rest.

The disable parking at the Medical Centre side has longer distance to the Supermarket than the other entrance. But I decided not to use the other entrance. The other entrance’s automatic door sensor doesn’t work for me in the wheelchair. Last time I tried, I had to move back and force, side by side, waved my arms at the sensor, while being laughed at by group of teenagers. I finally found the spot where the sensor works for me. It was far away from the door. So I had to wheel as fast as I could, and it was still severe MEites’ fast which is extremely slow. When doors started closing, I wished they didn’t smash me in between. I felt exhausted and weak from the stress. It was awful effort just to get into the Shopping Plaza. And I am not going to use the entrance again.

Another pathetic experience… I cannot open disability toilet door in the wheelchair.

Every little episode like this is making me feel more that I am living in different world from the rest of people. It is something like Harry Potter’s magical world. Maggle cannot see Harry Potter’s magical world. The world I’m living in is not the fancy magical world, but disabled world. And able people just cannot see the world I am living in.

I am feeling numb about two parallel worlds. I just do what I need to do, when I can do it. Nothing more… It is my living. It is my existence. It is my normal life, even it is unimaginary to the rest of the world. If you ask me, I will tell you that I am really really sick of it.

At least, I felt good about getting few things done yesterday. I can feel peace until I really need to do another shopping like this.

After I packed my wheelchair back in car boot, I decided to drive around while I’m on fire. Since I don’t drive often, my car battery needs to be charged by driving around sometimes. I know it is a waste, but I cannot go out without my own car. And the battery could be flat in a couple of weeks if I am not careful. So I drove motor way towards South for about 10 minutes and headed back home.

I’m in my bed now, but I cannot fell asleep until adrenaline like energy is all used up. Is “wire in blood” right expression for it? When the “wire in blood” is gone, it is the beginning of payback. I have no idea how I will suffer from it. But considering I am already in the middle of bad flare up and amount of exertion I did (way too much), I’m guessing it is going to be really bad.

Nobody will see how I suffer. Nobody will help when I am thirsty but I’m paralysed. There will be no end, and I just have to repeat this vicious cycle until my body will completely give up or some treatment and/or cure for ME/CFS will become available.

Such life…

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