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What words do you need to remember on your bad days? Share to Raise Awareness!

I am writing this for me. But also, for you. In an effort to try and explain the journey I’m on. People continuously ask, why and how? What did I do to cause this? Or what do I think caused this? I can honestly say, I don’t know. What I do know is this…

For about two years, I have had days or weeks of exhaustion. I would feel run down, and tired and terribly low on energy. Sometimes to the point where I would visit the doctor and explain that something was wrong. They would run their tests and report that, on paper, I was healthy. In fact, I appeared to be very healthy. Occasionally, my cholesterol would be slightly up, or my hormones slightly out of whack. But all in all, I was a very healthy person. During one of these visits and rounds of tests, my inflammatory markers were slightly raised. Not enough to cause panic or indicate that anything was terribly wrong, but enough to puzzle the doc. There would be periods of normal blood tests, and then, times where those markers would go up again.

Read more: Living With Fibromyalgia

It was frustrating and confusing. As I felt something was not quite right, the exhaustion could be quite profound at times and I would find it difficult to push through. But I did push. I kept training, doing my work, going out and socializing. I kept being me. I kept busy and I would tell myself that I couldn’t possibly be that tired. After all, the doctor said I was fit and healthy.

Around a year ago, I got a bad case of the flu and an ear infection along with it. The first ear infection I’ve had since my swimming days. It took me about 5 weeks to recover, and even then, I could say my energy levels were not what they used to be. But, I continued to push through. I would occasionally have a day where I felt like I was walking through mud. Or a day where I just had no energy and would have to lie down. And then I hit the wall.

I woke up one morning, needing to go to the toilet as usual, and found I didn’t have the energy to open my eyes, let alone lift my head. The confusion, frustration, and panic are hard to describe. The sensations in my body even more difficult. I felt like I had the worst flu. My entire body was aching. Not only that I had other pain. My knees hurt, my arms felt heavy and were aching. My thighs, feet, hand, head, shoulders. Something was very wrong. I was laying there for about an hour. I remember eventually opening my eyes and looking at the bathroom door

and trying to figure out how many steps it would take to get to the toilet. I was also starting to feel thirsty. I eventually managed to sit up, two hours after waking up. I managed to get to the toilet, and then had to sit there for a while, so I could muster the energy to make it to the basin to wash my hands and have a drink. By the time I’d done that I was shaking so badly. I was not sure I’d make it back to my bed. For the rest of the day, I lay in bed, frightened and confused. I eventually found enough energy to pick up my phone and make another doctor’s appointment.

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I woke up the next day feeling only slightly better, managed to shower and drive myself to the doctor. By the time I got there I was once again exhausted and in pain, and as luck would have it, she was running late. I had to wait 45 minutes to see her, and I could hardly hold myself upright. When I got into her room, I burst into tears and asked her please to figure out what was going on.

I left with a referral to a rheumatologist and another round of blood test. The blood test was the same, slightly higher inflammatory markers, but everything else fine. I was lucky to get into the rheumatologist the next week. By the end of the week, I’d spent a day in the hospital and I’d had every test done known to man. All came back normal.

Now I know this may sound odd, but when you’re feeling so damn awful, it is quite disappointing to hear that you appear healthy. A little wear and tear, but nothing you wouldn’t see in anyone else my age.

A month and a half later I went back to the rheumatologist, who diagnosed me with fibromyalgia, myalgic encephalomyelitis (or Chronic fatigue) and Raynaud’s syndrome. Like one is not enough!

Over the last few weeks, I have had to try and work out how I’m going to manage living like this. There is no cure, and there is no medication that is proven to work. I am learning that everything I do has consequences. Every task uses energy, and I have to gauge, not only how much energy I have on any given day, but also when to stop. Not every day is the same. Some days I have a little extra, and some days I start with the tank already on empty.

Things that were so easy to do before can knock me down for days.

Driving and shopping have become two of my biggest challenges.

I can’t drive for longer than 20 minutes. If I drive to the shops, do the shopping and drive home, the fatigue is so profound, I hardly have energy left to put the food away. Washing my hair became a serious effort, so I got rid of most of it. Hanging washing on the line is another. I can’t do more than a load of washing at a time without feeling like I’ve just completed a triathlon.

I have learned that I can only do one of these a day. I can’t do the washing, clean, or go shopping on the same day. I must weigh the tasks against the consequence. If I do too much, I will spend a day or 3 in bed, hardly able to move. On days like this, even trying to read is not an option. I am so exhausted that I can’t concentrate, I can’t think clearly. I’m forgetful too. I forget words, I forget what I was doing, I forget how to spell words. And not in a funny way, it’s awful when you’re speaking and can’t remember a word or what you were about to say.

Read more: Blaming Myself

I love going out and spending time with friends, the consequence is spending a day in bed after the fact, trying to recover. I still love going for walks, but I have to weigh my options carefully. Do I tidy the kitchen? Or walk the dog? Do I skip the washing? Or walk the dog? I don’t mind telling you the dog wins most days.

I’m learning to accept a bit of dust in my home, or spots on the floor that need mopping. I’m learning to ignore the mess in my kitchen or ask for help. If there was ever a cure for an OCD clean freak, I have found it.

I am in pain, every day.

Some days are bearable, others are not. Some days I have a quarter tank of petrol and can get some things done. Other days it’s empty. I have had to learn, and I’m still learning, what I can and can’t do. I’m trying to find a balance, so I have fewer crash days and more days where I can do at least a little. This is not an easy road. My head says I should be able to do all the things I once could, but my body won’t allow it. I get angry and frustrated and sad. On the bad days I look out the window and know I probably won’t feel the sun on my skin that day and it makes me sad.

I don’t want your sympathy. It is what it is. I hope it goes away one day. I hope I’ll wake up one morning a feel good again. That I’ll be able to get back in the gym and train. That I’ll zoom around the shops and get out of there in record time. But for now, this is my reality. I don’t want your sympathy, but I do want your understanding.

When I say I’m exhausted, it means I can’t stand without shaking from fatigue. When I say I can’t come to see you or meet you, it’s not because I don’t want to, I do. I really do, but on that day, I don’t have the energy. I may cancel too. Not because I don’t want to see you, but because when we made plans I was feeling okay, but this morning I crashed. Please. Try to understand.

What words do you need to remember on your bad days? Share to Raise Awareness!

Source: CureUp

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