ME/CFS: It’s Not Fair

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It’s one of those days. You know, one of those days where everything hurts, everything makes you cry, you feel so alone and isolated, life feels empty and meaningless. One of those days.

I have ME/CFS which comes with chronic and severe fatigue and pain. I’m exhausted and in pain. I’m stuck in bed watching TV because I’m not well enough to do much else. RSI in my wrist has flared up which makes typing difficult, and any creative projects I could work on impossible and unwise.

I feel left behind and left out, like the world is rushing by whilst I sit and watch from the sidelines. I know this isn’t an entirely accurate perspective, and I know I don’t always feel this way. It’s just today I’m at home, in bed, watching TV because I’m not physically well enough to do much else. I could push myself, but that will only increase symptoms and make tomorrow worse.

I’m well enough to be very bored needing to rest.

Other people, ‘normal’ people can feel bored, and get up and leave the house. If I chose to leave the house today then I’d be unable to leave the house tomorrow to see a friend as planned. I can’t choose to go outside and do some gardening because it takes too much energy, and I can’t use my wrist. The little crochet dinosaur I’m working on for a new nephew also has to wait because of my wrist. I have to save all my energy today so I can use it all tomorrow, and spend the weekend in bed recovering.

This is where the tears come in.

I’m crying because I don’t know if I’ll ever be physically better.
I’m crying because I feel so alone and left out.
I’m crying because I don’t feel in control of my life.
I’m crying because I don’t want this to be my life.
I’m crying because I don’t know how, or if, I can change this.

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.

 

Sick.

I feel like I’m continually explaining my lack if updates on this blog. It makes me sad because I love writing but haven’t been able to.

For the last few weeks I’ve been incredibly unwell and the end is not in sight. My GP isn’t sure what’s wrong with me but suspects a virus. I have a never ending sore throat, varying levels of pain and fatigue like you wouldn’t believe. At it’s worst lying in bed reading drains what energy I have. I have to put my book down and sleep because I can’t concentrate.

I’ve cancelled everything I possibly can. I’m eating well, drinking plenty, taking my multivitamin again, taking painkillers as needed but I’m not getting better. I can only hope that time and rest will help my body heal. Until then it’s highly unlikely that I’ll be updating this blog.