5 things I’ve learned from living with chronic fatigue

It’s been nearly two years since I last spoke about Chronic fatigue/M.E on my blog so those of you who are new around here might not be aware of my story. I was diagnosed with Chronic fatigue (CFS) back in June 2014 after what felt like an endless amount of tests and trips to the doctors and hospital. I was so relieved when I got the diagnosis as my family and I had been in the dark about everything for such a long time.

A photo of Elin

For those of you who don’t know, chronic fatigue/M.E is an extremely debilitating condition which is characterised by extreme fatigue and tiredness which doesn’t go away with rest. CFS/M.E is a condition defined by the presence of many symptoms with some of the most common being extreme tiredness, unrefreshing sleep, cognitive dysfunction (‘brain fog’), sensitivity to sound and light, dizziness, anxiety and mood swings. Symptoms vary for each individual but in my case, the most common symptoms have been extreme tiredness and weakness, dizziness, anxiety and fainting.

I go through good and bad spells when it comes to my CFS, it all depends on how I balance it. I can feel all well and good on some days but I can be bed-bound on others. When I was first diagnosed, I found the condition to be so debilitating and still do to this day but I feel like I’ve found more ways to cope with it now than I did back then.

I’ve definitely learned many lessons in the four years since being diagnosed with this condition so I thought I’d share those with you today in the hope that someone might be able to relate.

The smallest task can be tiring

On the days when I’m feeling extremely tired and weak, I’ve learned that even the smallest of tasks can prove to be so difficult. Things like walking up the stairs can be completely draining for me. When I was first diagnosed, when I wasn’t sure how to cope or balance it, things such as picking up a toothbrush was hard as I didn’t have any form of energy in my body and nothing I did gave me any either. I’ve learned that I can’t blame myself for not being able to do the smallest of things because at the end of the day, I can’t help it.

It’s all about balance

When I was first diagnosed, I was referred to a physiotherapist who I saw every so often during the course of a year. She explained the fact that there isn’t a cure for CFS at this moment in time so the only way of managing it is to keep a balance between everything that goes on in someone’s life. At this point, I was in my first year of sixth form and I missed a lot of school because I didn’t have the energy to go . On the days when I did attend sixth form, I came home with zero energy and feeling extremely tired meant that I couldn’t do anything else on those days. This proved to be very frustrating at times as I missed out on spending time with my friends because it just wasn’t possible for me due to how drained I felt.

I’ve learned that I have to keep a balance. I can’t do too much on the days where I’m feeling more like myself because it could affect me on the next day. On the days I feel weak, I have to do some form of excercise even if it’s just something like walking on the spot, just to let my body know that it still has to function.

I now know my limits, I know how something might affect me and my energy levels. If I go out on the days I feel more like myself to do something such as go for a walk or go shopping, I know it will be draining for me. I don’t have the energy levels that someone my age would typically have but I’ve now learned how much I can do and I normally have a good idea of how I’ll wake up feeling the next day. It’s something that my physiotherapist liked to call a boom and bust situation, if I do too much one day, I’ll pay for it on the next.

Explaining can be hard

Explaining how CFS/M.E affects me can prove to be very challenging at times. When I’ve told people in the past I’ve had the response of “Aww well I feel tired too.” But it’s not like the typical feeling of tiredness. It’s lack of energy on a whole new level, something that can sometimes be impossible to put into words. I still find explaining my condition to be hard at times, even after living with it for four years. As I mentioned at the beginning of the post, it can affect me in so many ways and it’s been a long road for me to personally understand it and how to deal with it so as you can imagine, explaining that to someone else is even more challenging.

Putting your health first is important

When I feel stressed or anxious, I know that my chronic fatigue will flare up. During the last few months of last year, I felt extremely anxious on some days and that in itself was draining but I paid for it in the form of weakness aswell. I found myself fainting on more than one occasion, not ideal but I couldn’t stop it from happening. I never know when that feeling will come over me, I’ve sometimes lost consciousness when I least expect it, the feeling has come over me even when I’m sitting down. Feeling like this has taught me that if something is making me feel particularly anxious or is affecting my health in any way, I need to take a step back from it. I’ve learned that putting my health first is more important than anything else. I now tell myself that it’s ok to have days of rest, it’s ok to go back to bed. I used to feel so guilty for spending most of a day in bed but I recently realised that putting my health first isn’t a waste of time and that it’s one of the most important things that I think everyone should do.

I’m not alone

Chronic fatigue can be extremely isolating, especially when I have to miss out on doing things or going places just because of how I’m feeling. But something I’ve realised in the last few years is that I’m not alone and there are so many people who are living with it also. People who I can talk to about it, people who will understand. Anyone of any age can be affected by CFS and I didn’t realise this when I was first diagnosed. I felt so isolated as I felt like I was the only one around my age who was suffering from this condition and it wasn’t until I created my blog that I realised that there are so many who are in the same boat. It’s definitely a relief when I can talk to someone who is in a similar situation because as I said before, explaining it to someone who hasn’t experienced it can be difficult. Talking to someone who doesn’t necessarily have CFS but has similar symptoms whether that be fainting or something else can also help as it’s always good to know how others cope.

My health is one of the biggest battles I’ve ever had to face and I still face it on a daily basis. I can’t choose the days that I feel more like myself, I can’t change how I wake up feeling. My brain will always ask “why?”, “why can’t I have some form of normal energy?” when my body decides to tell me “sorry, not today.”

The days that I wake up feeling completely energised are extremely rare. If I go out somewhere, I try my very best to take my mind off my health and my chronic fatigue because I want to enjoy every moment I have that allows me to forget about it to some extent. But there’s always that little voice inside of me that says, “please don’t faint.” Although I carry that fear, there’s also determination in me, that voice that tells me that I can do it, I can push myself just that little bit more.

As i said, CFS can be extremely debilitating, I know it’s even more so for some people than it is for me. I’m lucky in the sense that I do have good days which allows me to go out and about for a little while and I’m grateful for those days, it’s the little things. I know my limits, I know when I have to make sacrifices and I’ve learned to accept that.

A quote on my phone that says positive vibes

It can be a negative and frustrating thing to live with and I do still have really bad days in terms of my chronic fatigue but I always try my best to maintain a positive mindset no matter what. As I said before, I now know my limits, I know how important balance is and although it can be hard, I know that it’s important to put my health first even if that does mean having to turn down a chance to meet my friends or any other kind of opportunity.

Do you suffer with Chronic fatigue/M.E? Or do you suffer with any of the particular symptoms that is related to it or that I listed in this post? I’d love to hear about your experiences and how you cope with it. I know it can be hard, frustrating and isolating but always remember that you’re not alone.

Elin x

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4 Comments

  1. March 18, 2018 / 10:29 pm

    Well done for opening up about this on your blog lovely! It’s a really educational post and I”m sure it will help a lot of people xxx

    • myblurredworld@gmail.com
      March 19, 2018 / 8:15 am

      Thank you lovely xxx

  2. March 19, 2018 / 8:51 pm

    Wow Elin, you really touched me with this post. You are so strong and beautiful, you can be very proud of yourself. I think everything you wrote down in this post is not just very helpful for people in a similar condition, but also very educating. I didn’t know what it felt like to live in this condition, so thank you so much for opening my eyes. Stay wonderful,
    much love, Elena

    • myblurredworld@gmail.com
      March 19, 2018 / 10:42 pm

      Aww thank you so much Elena, that really does mean a lot!x

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