Waiting with ME

We have all been there. We’ve booked in a tradesperson to come around and fix something in our home (whether rented or owned). You plan for it, often taking a day off work. They don’t turn up at the agreed time. 30 minutes, an hour later, still not here. You call to find out what’s happening. You might be lucky and the person/company answers and says, yes, there in 1 hour. Which is 2 hours after the agreed time. But at least they are coming. Or you will be unlucky and they say that they cannot come today, can we rearrange. Note the lack of the word sorry. Or even worse, they don’t answer at all. They never call back.

If you are a healthy person, this experience is frustrating. It wastes your time, it means you have often used up a day’s holiday for nothing, and have to use up another for when you rearrange. You might have to chase and chase, or start all over and try to find someone else. It can be stressful and pretty much muck up your day. When you have a chronic illness like ME, the frustration & stress of the same experience is quadrupled.

I’ve been struggling to keep up with all the tasks in my garden and I have been trying to find a gardener to help me out. The idea is to get someone a few hours each month to do some of the tasks I’m unable to do anymore, like turning the compost, mowing, implementing the redesign of a border (lots of digging). This would then leave me with the ‘easier’ tasks of sowing seeds and bulbs.

I thought I’d finally found someone. Someone who gardens organically, no pesticides, and who has an interest and knowledge of plants and soil. I explained to them I have a chronic illness and need help as I’ve said above. We agreed a date and time via email, 10am 20th October. A phone call a couple of days before. He couldn’t do as quite as many hours, could he do just 4 hours, and maybe start at 2pm. 4 hours was ok by me, but I’m often very weary in the afternoons, so could we stick to 10am. He agreed to this and we said ‘see you Thursday’.

Now, when you have an illness like ME, you need to plan your life carefully. You only have so many spoons (energy) a day, a week. If you are going to have a gardener (or any tradesperson) come around, this will still use up spoons. You have to be there, to explain the problem or give directions to what needs to be done. Though it might not seem like much to healthy people, when you have ME, having people around can be quite tiring. Even when it’s about doing something you want, that makes you happy, it can use up a lot of spoons. You often need a few days to recover before you can get on with anything else.

On top of this, you have probably planned your week around this event, as I had. I knew it would use up a lot of energy having the gardener around, so I held off doing other tasks and rested up even more than usual, so that I might be well enough to cope when the gardener arrived. I also made sure that the few days following the event were quiet, as I knew I might get hit with PEM, post-extertional malaise, and wouldn’t be well enough to do anything at all for several days, even a week after the gardener had been here.

I planned, we agreed the time, 10am 20th October, everything was set. Only he didn’t turn up, did he. After 30 minutes past the time, I called him to see where he was. I only had a landline number, so, you guessed it, I got an answering machine. I left my message and asked him to call me back. I still hoped it was a case of him running late, traffic etc. By 11am I was feeling anxious. I realised that only having a landline number meant he probably wasn’t going to get the message until the end of the day. I had no other way of contacting him. I tried searching the web, but he doesn’t seem to have a web presence, not even on Yell.

At this point, I was tired and feeling stressed. I tried to lie down to relax, but just couldn’t. He could still, in theory, turn up. So I felt I had to try and stay alert. With ME, staying alert can use up a lot of spoons. It sends my body into a kind of spin, into a nervous energy state that leaves me shaking and then builds up to exhaustion. And this is what happened. By 12pm I kind of gave up, though worried that maybe he might turn up at 2pm after all, despite my request that we stick to 10am. But I thought, I could at least get an hour or so of rest. I went to bed. 10 minutes later there was a knock on the door. Feeling light headed and weak, I thought it might still be the gardener so I got up and answered. It was the postie.

I was shattered. But there was still a chance that he might turn up at 2pm. Now, my partner had been working in town so that having the gardener around didn’t disrupt him working. We now had a chat and decided he would come home so that I could just go to bed and rest and he would answer the door if the gardener did turn up at 2pm, and turn him away. Because at this point I was in a bad state and wasn’t up to anything. In addition, the gardener not sticking to the agreed time also impacted on my partner who had to change his working arrangement again.

Of course, he didn’t turn up at 2pm. And I was unable to rest properly anyway. My body had gone into a hyper state and I was neither able to concentrate or relax. By not sticking to the agreed time, by not turning up, the impact was to increase my ME symptons.

The phone rang sometime after 7:30pm. I let it go to the answering machine as I wasn’t up to speaking to anyone. It was the gardener. Apparently ‘we’ got our wires crossed, could I call him back? Exactly what part of an email & telephone exchange that clearly stated our agreed date and time was getting our wires crossed? There was no ‘we’ about it.

Earlier today, the gardener had  left a second message for me (I was too exhausted to deal with phone calls at this point). He said this time  that he got me confused with another client, and turned up at her house instead. Which not only makes me question his organisational skills, but also makes me question why he didn’t call me once he realised that he turned up at the wrong place? And maybe, you know, come to my place, even if late?

Today I feel weak, and just writing this has left me shaking. I need to go back to bed. But I desperately wanted to write this, in the vague hope that some tradespeople might read this and realise the impact their delays or not sticking to agreed times can on healthy and chronically ill people.

So I could email it to the gardener, in the hope that he might read it and understand the impact of his actions, leaving me waiting with ME.