August 13, 2020

Dear Chronic Disease: You will not Steal my Joy.

It feels like it has just been one of those weeks with my health.

The chronic fatigue seems to have been with me for 80 percent of the time.

I’m sleeping much longer than usual, but listening to my body and allowing myself to sleep longer. It has to be better than the feeling of not sleeping at all.

The 20 percent energy I have left is leaving me with feelings of overwhelm for getting things done and keeping my life together.

I’ve been continuing with my garden throughout, and the productivity has rewarded me with joy. I don’t particularly feel that way while I’m doing something strenuous, but certainly afterward.

It is a feeling of joy that I thought had gone forever. That is not to say that I’ve been unhappy all of the time—because I haven’t.

Chronic illness has tried its best to take from me, but I’ve found bouts of happiness along the way.

However, I’m getting a different feeling of joy from my garden that I never knew was lost until it came back. I’m discovering that just like different types of sadness, there are different feelings of joy—similar to different shades of colours.

I think it might be gratitude too, as I’m aware there is a lot of suffering going on in this strange world at the moment. The thought of COVID-19 rampaging across the world is raising my level of awareness to be blessed for each given day. I’ve been telling myself that the seeds, plants, and my recently new Worcesterberry bush is a great little investment. They’re reminding me to work with what I do have—which is a wonderful sized garden.

I have the ability to grow my own food.

I’ve enjoyed gardening or appreciating gardens for a couple of decades. My own wavering health and the recently fragile health of a nearest and dearest, really bashed the spade on my head for continuing with any form of gardening. My strength was needed to put the care elsewhere.

This left me with little energy to put care into myself. My partner, however, did keep trying to top my levels up, and, at times, I don’t know what I’d have done without him.

It hasn’t been possible for me to keep up with the labour side of a garden in the previous few years—digging up grass, turning over borders, keeping on top of hedges—it has been incredibly frustrating. The mind knowing how it wants the garden to be and how easy it used to be to achieve such a state, compared to the moment when you are sick and can’t. It left me with a great void, almost like a glass that was once easy to fill but now could only reach a certain level before being halted. It was like the glass had a hole in the bottom and was draining out quicker than I could pour the liquid back in.

Helplessness and despair filled me as I watched the garden go out of control. I knew, “it could be better.” I’d experienced better.

Twenty-one years earlier, I lived in a different house to the one I live in now. I was pregnant and healthy with my first child, and my garden was my joy. It too was a big work in progress as I’d bought a rundown house with a rundown garden. My surrounding neighbours would always comment about how wonderful it was starting to look and how pretty the flowers growing were.

I would go out every evening after work to weed, tend, and water my plants. This was actually how I managed to break my water at 38 weeks pregnant. I was weeding the border down on my hands and knees, when pop my water burst.

My beautiful dark-haired son was born in November, which meant by the May of the following year I had a bonny little baby boy at the age of smiles and sitting up. I also had the pleasure of teaching and entertaining him. It was probably my favourite summer of my life and I spent much of that time with him sitting on a blanket in the garden near me while I was working on the garden. I thought I was clever for producing this gorgeous, though at times serious and frowning, child of mine.

Whenever I took my son for a walk in his pushchair, my neighbours would coo and gush over him while commenting on my developing garden. They’d give me positive words of encouragement. I was contributing toward the upkeep and look of the overall neighbourhood—because I could. I was fit, healthy, strong, and a young mum with a new baby, but still doing a great job with a garden.

Life has thrown a few unexpected twists and spirals at me, and I’m now in a different house with a large garden. I’ve been in this house for seven years. However, my experience amongst the neighbours has been different.

I moved in as a single parent of three with a chronic health condition, and this alone is quite a combination. We often hear healthy parents of two with regular support networks complain about how difficult parenting is. My health condition creates more stigma because of the fact that unless I’m having a flare-up, then it is not clear that there is anything wrong with me. I look healthy on the outside but my immune system isn’t, and nobody can see the immune system. Therefore it is widely misunderstood.

My life now is different. I’m 42 years of age and in the scheme of it all, I’m still young, I certainly don’t think I am or think I should feel old.

My life is about preventing flares to my rheumatoid arthritis. Flares that make me weak, anaemic, and lose weight; that make me walk and move like a 90-year-old and unable to open a door.

Health has to be a priority for me every day because if I don’t make it so, then I risk unsettling a disease and progressing it.

I don’t like the medication that I’m on. So why would I want to risk trying to need more?

Therefore, there are times when I’ve been unable to keep on top of my garden. Gardens are always growing. First there was the overgrowing grass, then the hedges started going out of control; the fences began looking dilapidated and in need of a coat of paint; the weeds under the hedges seemed to pop up in defiance.

So, I experienced the judgements from neighbours differently this time. Not such positive judgements. After all, they are mostly retired, a fair bit older than me, and in their minds, I’m younger, so I should be keeping on top of the garden better than them.

And yes, if life was to go to plan then, that’s exactly how it should be. I tried to think about how I could get around this the best. Common sense told me to explain. I tried to explain it once.

“I have rheumatoid arthritis.”

The response was, “I’m in my 70s and I have a bad back.”

The neighbour didn’t want an explanation of what rheumatoid arthritis is, and to be fair, that was their choice. They didn’t want enlightenment on the immune system that is ageing.

I’m younger and obviously it can be seen that if you put us both side by side, my face and body look younger. However, we can’t take our immune systems out of our bodies to compare with each other. If we could, then my immune system would probably look exactly the same in age or even worse and theirs, and they don’t have the three children or work to manage on top of a garden like I do.

Another older neighbour did have a little more understanding.

“You need to pay somebody to do your garden, that’s what I do.”

Okay. I have a partner, but we don’t live together for practical reasons. Mostly due to the size of our home and also because he has a daughter too.

Financially, I have three dependents. Affording somebody to do my garden at that point was not practical. I was paying for driving lessons for my eldest son and saving up money for him to go to university. I genuinely wanted to invest in my family to help them. As a single mother in the UK, and knowing full well the extent of our food banks, I felt lucky to be able to do that.

The garden had to take a back seat. I needed to plough into work for financial gain just to be able to do that.

Another neighbour had even better advice.

“You can get your sons to help you.”

A single mum with teen boys who are fairly close in age. How many teens are enthusiastic to do their part without a lot of nagging? I don’t believe I have teens who are any different from others.

Chronically ill mothers can only nag so much before they become ground down, and there were many times I found myself in bed just after our evening meal just by doing that.

Then, of course, I do have a partner, but there were reasons for him not being able to help keep on top of the garden. Mainly, he has his own responsibilities, bills, a child, and at that time, the work he was in was really working him hard. He was becoming sick himself.

However, this year seems to have been different. We have a worldwide nasty virus and I’ve been shielding with my family. My teen boys seem to have grown more into themselves and my partner is in a better job with a better quality of life.

My disease is under control with medication, diet, and self-care techniques. One technique has been to carry on and ignore judgemental neighbours. Neighbours offering advice or judgements but never offering help.

Of course I can forgive this and we are now all on much better speaking terms. I don’t know what problems they’ve got going on in their lives.

We’ve been able to tackle the overgrown garden and it is developing wonderfully. The teens have joined in a little too. I’ve grown edible flowers, wild strawberries, rhubarb, peas, beans, many herbs, pea shoots, chilies, lettuce, and radishes, to name a few.

Not everything has been a success. Many of my peas have not survived and I felt disheartened as they are supposed to be easy. Chronic illness has taught me to have a backup plan. I’ve therefore planted some French beans as a replacement.

It has been a joy regaining control over the garden. To the point that last night, while watering my garden and planting a Worcesterberry bush, I had one of those comparison moments we humans may have from time to time. I was taken back to being pregnant with my son. It was an evening in late July and I had decorated my dining room with a lovely lilac colour. I was outside on a fresh and newly built patio watering pot plants and looking back toward the dining room that was lit up.

I was feeling proud of my house that I was improving with my hard work and little money. Contentment washed over me. That was the summer before one of the best summers of my life.

Yesterday evening in late July, I looked up at my lit kitchen. It was decorated a nice teal colour a couple of years ago by my own hands.

I was swinging my watering can happily after watering my plants, and a thought crossed my mind:

What if this is a sign that next year is going to be another best summer of my life?

I forgot how much gardens can give us hope and I am feeling quite grateful for that wonderful feeling.


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