More than “tired”.

Ahhh, the long awaited update! Well, I’ve been waiting ages to be able to write a post, even if no one else has been waiting to read it!

My excuse, this time, is serious illness. I posted quite a while ago about being unwell with an unknown plague. It took a few more months of symptoms and tests before my GP referred me to a consultant physician. Within about five minutes this doctor diagnosed what I was hoping I didn’t have. Myalgic Encephalomyelitis  or Chronic Fatigue Syndrome.

Now, stop right there! I don’t want you, my dear reader, to automatically conclude that I was very tired and little else wrong, as so many people tend to do. The CFS label is very misleading and  doesn’t come close to describing the severity of symptoms people experience.

Each day was torturous. I couldn’t do even half of what I wanted to do, let alone the things I needed to do. Standing up and walking around zapped my energy quickly. I couldn’t go shopping with friends. Just walking slowly around a store for fifteen minutes would exhaust me. I’d have to sit down and rest, and even then I’d spend the following days in bed recovering.

A lot of the time I couldn’t even watch movies in bed. I couldn’t comprehend what was happening the movie and my eyes wouldn’t stay open. The only uni study I did was under the influence of large amounts of caffeine. Even then, I’d fall asleep half way through the fifty minute lecture I was watching whilst lying down in bed.

Nothing I write here will convey the extreme fatigue. Nothing. Until you’ve been there, you can not and will not understand. You might relate to being exhausted after a long, busy day or a sleepless night, but that’s very different to the never ending, day-after-day, soul zapping fatigue that comes with ME/CFS.

Don’t argue with me now. I know people try to understand, want to understand, and do have compassion, but, honestly, this is an alien world. In the last six months I’ve experienced the worst health I’ve ever had in my life. I’ve also been told everything from “I’m so sorry, that must be really hard” to “You should try exercising more, that will give you more energy”. I’ve also heard, countless times “I’m tired too, I must have that [ME/CFS] too!).

No. No you don’t. Well people, normal, healthy people can recover from fatigue with some rest. A few quiet days, some decent sleep – cured. For me, that doesn’t happen. If I continually push through the fatigue, my symptoms get worse and worse until I’m actually unable to do anything but rest in bed.

Let me explain what a single day was like. I’d wake up at a reasonable time, maybe 8am after eight to ten hours of sleep. I’d be exhausted. My body would feel heavy and weighed down, like I’d been up all night. I’d drag myself from my bed for some breakfast, then eat in bed and remain lying down for the rest of the day.

My body ached in so many different places. Every day meant multiple doses of the strongest pain killers I could get without a prescription. They’d ease the pain and make moving from my bed more bearable. The pain killers didn’t ease the headaches though. I’d have to turn everything off – no lights, no laptop, no phone. A dark room with an ice pack on my forehead and double doses of pain killers to ease the pain.

I had to take time off work. Even with two energy drinks and multiple cups of coffee, I’d struggle through my five hour shift, then come home and be asleep within a couple of hours. My social life disappeared. I didn’t have energy to leave the house for something as unnecessary as socialising. Thankfully some friends did visit, and some would take me places which helped a lot. A lot of the time though, I didn’t have the energy for socialising.

So, I’ve had six weeks off work, I’ve started a tricyclic antidepressant called Nortriptyline, and I’ve been resting a lot. Medication and rest have made a big difference! I can concentrate (without caffeine) for much longer – I don’t fall asleep watching uni lectures online, although I am tired afterwards. I can walk for much, much longer without becoming exhausted, as long as I walk slowly. Plus I can stand and chat to people, even my housemates, without needing to sink to the floor in exhaustion after a few minutes.

Things are definitely looking up. I’m returning to work tomorrow. The plan is to do the same number of hours, but in shorter shifts. The Nortriptyline has been increased slightly and, fingers crossed, my symptoms should continue to improve.

So whilst my physical health has been terrible, but is improving, my mental health has been rather average. Up and down, slightly all over the place. That, however, is for another post.