This type of post is very much out of my comfort zone as I tend not to tell anyone apart from my parents and my boyfriend much about my illness and how it REALLY effects me. I guess I’ve felt ashamed and embarrassed by it, it makes me feel like a bit of a failure and I’ll do almost anything to try to show people that I’m still me and still "normal", whatever that is.
I’ve had a chronic illness, more specifically Myalgic Encephalomyelitis, for nearly 10 years. A decade, that’s a long time to feel unwell. Not one day has gone by in basically ten years that I’ve not felt sick. Imagine that. I can’t imagine being well, even in my dreams I seem to be unwell! A lot of people think it’s “the tired disease” and how I bloody wish it was. I’m at the stage now where I would love to JUST feel tired. On a day to day basis I suffer with these symptoms;
Brain Fog -
This along with fatigue is one of my worst symptoms. I never really knew what brain fog was and kept saying oh I don’t have that. Turns out what I was describing, which I thought was anxiety symptoms was only bloody brain fog. It’s like the world is out of focus and you can't think properly. Nothing is clear and I sometimes say it's like being in a dream. It makes my anxiety SO BAD.
Cognitive -
It may seem difficult to imagine not being able to think however this is what I live with everyday. I estimate that my cognitive abilities fluctuate between 30% and 60% of what they should be and that’s on a good day! I forget things all the time, I have to set timers if I’m cooking anything because I will forget about it and burn the place down.
This along with fatigue is one of my worst symptoms. I never really knew what brain fog was and kept saying oh I don’t have that. Turns out what I was describing, which I thought was anxiety symptoms was only bloody brain fog. It’s like the world is out of focus and you can't think properly. Nothing is clear and I sometimes say it's like being in a dream. It makes my anxiety SO BAD.
Cognitive -
It may seem difficult to imagine not being able to think however this is what I live with everyday. I estimate that my cognitive abilities fluctuate between 30% and 60% of what they should be and that’s on a good day! I forget things all the time, I have to set timers if I’m cooking anything because I will forget about it and burn the place down.
Lack Of Energy -
I can’t even begin to describe what a lack of energy feels like. It’s funny because I say “what does it feel like to feel ok” to my boyfriend a lot. I can’t remember at all a life before illness, I have no idea what not feeling awful everyday feels like. Every so often I get an “alright” day which is basically a well persons “I’m dying I need to go to bed” day! I recommend not telling me your tired or “I get blue in the winter too” like one person once did. Needless to say they were swiftly removed from my life.
I can’t even begin to describe what a lack of energy feels like. It’s funny because I say “what does it feel like to feel ok” to my boyfriend a lot. I can’t remember at all a life before illness, I have no idea what not feeling awful everyday feels like. Every so often I get an “alright” day which is basically a well persons “I’m dying I need to go to bed” day! I recommend not telling me your tired or “I get blue in the winter too” like one person once did. Needless to say they were swiftly removed from my life.
Pain -
I was relatively lucky up until about a year ago that’s my main source of pain was head and neck. I regularly see a chiropractor to help my neck which is always tense. Not really a surprise though is it? I’ve now started to get full body pain, I feel like I'm about 80 most days. Inflammation in the body is the cause and no amount of painkillers will do anything to help. The only way to describe it is if you went and did a marathon (but didn’t warm up first), then went swimming and danced for a good 5-6 hours non stop, except of course I cant do any of that - I have sat in a barn for 2 hours petting lambs and felt like I've been through the wars. How does that work?? My arms ALWAYS ache for absolutely no reason and it’s like every muscle in my body is being squeezed.
I was relatively lucky up until about a year ago that’s my main source of pain was head and neck. I regularly see a chiropractor to help my neck which is always tense. Not really a surprise though is it? I’ve now started to get full body pain, I feel like I'm about 80 most days. Inflammation in the body is the cause and no amount of painkillers will do anything to help. The only way to describe it is if you went and did a marathon (but didn’t warm up first), then went swimming and danced for a good 5-6 hours non stop, except of course I cant do any of that - I have sat in a barn for 2 hours petting lambs and felt like I've been through the wars. How does that work?? My arms ALWAYS ache for absolutely no reason and it’s like every muscle in my body is being squeezed.
Fatigue -
I can't describe this and unless you've experienced this form of debilitating exhaustion you 100% wont be able to comprehend what it's like. Most days I wake up feeling worse than when I went to bed, even if I have slept! No amount of rest or sleep will make you feel refreshed, it's the weirdest and cruelest thing I've ever experienced.
I can't describe this and unless you've experienced this form of debilitating exhaustion you 100% wont be able to comprehend what it's like. Most days I wake up feeling worse than when I went to bed, even if I have slept! No amount of rest or sleep will make you feel refreshed, it's the weirdest and cruelest thing I've ever experienced.
Sleep -
Alot of people suffer with insomnia or lack of sleep. I had a horrible bout of insomnia a few years ago and I am super lucky that it's not like that anymore. The worse I feel the less I can sleep, weird I know. Oh and also NO I don't sit around all day doing nothing which is why I cant sleep (insert eye roll emoji here) contrary to belief. I actually do more than i'm meant to do because i'm not a lazy person by nature and I have trouble sitting still most of the time! If anything I need to rest more. Dizziness, pain and brain fog don't exactly make you feel relaxed enough to sleep.
Alot of people suffer with insomnia or lack of sleep. I had a horrible bout of insomnia a few years ago and I am super lucky that it's not like that anymore. The worse I feel the less I can sleep, weird I know. Oh and also NO I don't sit around all day doing nothing which is why I cant sleep (insert eye roll emoji here) contrary to belief. I actually do more than i'm meant to do because i'm not a lazy person by nature and I have trouble sitting still most of the time! If anything I need to rest more. Dizziness, pain and brain fog don't exactly make you feel relaxed enough to sleep.
Payback -
EVERYTHING I do has a consequence. In normal everyday life you do things and don’t give a second thought to how you will feel during/after. You may go for a long day trip or weekend away somewhere and think your be tired for a few days, whereas anyone with ME
has to decide if they want to use energy to go to a shop or do some washing/cleaning. Sometimes just the thought of going out and doing something is enough to make me cry. I couldn’t tell you the amount of times I’ve gotten up in the morning and cried before having to even start my day, knowing I needed to get ready, which was going to use any spare energy I had. Then you have to try and go out after that! No one should have to dread waking up because they don’t know how they will get out of bed and start the day.
EVERYTHING I do has a consequence. In normal everyday life you do things and don’t give a second thought to how you will feel during/after. You may go for a long day trip or weekend away somewhere and think your be tired for a few days, whereas anyone with ME
has to decide if they want to use energy to go to a shop or do some washing/cleaning. Sometimes just the thought of going out and doing something is enough to make me cry. I couldn’t tell you the amount of times I’ve gotten up in the morning and cried before having to even start my day, knowing I needed to get ready, which was going to use any spare energy I had. Then you have to try and go out after that! No one should have to dread waking up because they don’t know how they will get out of bed and start the day.
Dizziness -
The symptom I suffer from without fail everyday. I've had so many tests and seen lots of different specialists about this symptoms, yet it still remains a mystery. My left ear did show some damage within the Eustachian tube on a scan so its partly that but the rest is to do with the autonomic nervous system not working. Which in turn comes down to Pots - (Postural orthostatic tachycardia syndrome is a condition in which a change from lying to standing causes an abnormally large increase in heart rate. This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.)
I actually hide the dizziness well as I've learnt to live with it, I don't exactly have a choice.
Photo Credit - TheHappyNewspaper
This is where the depression comes into play. I don't tell people I suffer with depression. It makes me feel weak and also immensely guilty. I have a lovely flat on the beach with my boyfriend, a gorgeous little puppy and two parents who are always on call if I need them. Yet, I feel so sad all the time. Probably not a day goes by that I don't cry. For a long time I refused to believe I was depressed and was so proud of myself for managing my chronic illness without it getting my spirits down. But I think 10 years takes it's toll and although you think it will get easier because it's become the new norm, it actually gets harder. The longer it goes on the more I feel I'm missing out on life, I do my best to live a relatively "normal" life but I do feel like I am surviving rather than living.
I mentioned earlier I feel guilty and rather ashamed about being unwell, this angers me because someone with say cancer or any "legitimate" illness wouldn't feel like this. Things people have said to me in the past have caused this though, I was once told "Oh it's just the winter blues, I get that too" when talking about having ME and there's been other times I've been told i'm either not sick, need to pull myself together, it's just anxiety (THAT OLD CHESTNUT) or other stupid things. I've been made to feel like it's my fault by close family and that I am a burden in certain situations. These words, which alot of them don't realise they've even said have shaped now I feel about myself and have really knocked my self confidence.
I miss the old Steph. I am no longer her, I don't feel like her, I don't look like her and sometimes I don't even know who I am anymore. I refuse to believe that life will always be this way and I hope one day I find a way to be well again. God knows I try and they say god loves a trier. I still laugh, I keep up with my social media and I always try to live the best life I can. I'm doing my best and right now that's all I can do.
Until Next Time xo
May is ME Awareness month,
visit /www.actionforme.org.uk for more information.
This is such a good, clear and concise post Steph. I'm so glad you felt able to publish it. I, for one, am glad you did. I'm so sorry for what you have had to endure for a whole decade. And to read that you're suffering from depression as a result of M.E. genuinely breaks my heart. Loads of love from a fellow sufferer
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