For ME Awareness Week I shared a number of posts across social media which showed the true impact ME has on people’s lives. I have decided to combine these individual posts in the following article. The topics highlighted only cover a small number of challenges ME sufferers face daily, but they do give an insight into the reality of living with ME. This is the real ME.
Showering – my weekly cardio workout
I had lots of plans for today, but true to form ME is kicking my butt.
I had my weekly shower this morning and I’ve pretty much just slept all day. My husband and I have a carefully orchestrated routine which gets me from my bed, to my shower chair and back to bed within just 5 mins. But showing still causes considerable pain, and afterwards I feel like I’ve run a marathon.
This is The Real ME.
Simple tasks that healthy people take for granted, can often leave us incapacitated for hours or days afterwards.
If you would like to read more about The Personal Hygiene Challenges I Face Living with ME/CFS
If you are wondering what I’m laying on, they are ice packs wrapped in dry flannels. I struggle to regulate my body temperature and I often overheat causing severe dizziness.
Hypersensitivity – when the world around you causes pain
You might assume that pain and bone crushing fatigue are the worst symptoms of ME, but for me personally, I find the hypersensitivity that accompanies this illness the hardest to cope with.
I’m hypersensitive to everything!; light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these things cause me pain, nausea, fatigue, headaches and migraines. The slightest stimulus heightens my senses and causes palpitations, sweats, tinnitus, dizziness, chest pains and difficulty breathing.
Hypersensitivity is probably the most misunderstood symptom of ME. And it’s extremely isolating.
The only way to avoid this pain, and the scary symptoms that accompany hypersensitivity, is to avoid contact with the stimulus that causes the harm – this is the isolating part.
To help combat hypersensitivity I have blackout blinds in my room, I wear ear plugs or ear defenders and sunglasses, I have a chemical and fragrance free house, and a very restricted diet. I’m unable to take medication which could help ease my pain and other symptoms, and I have no option but to isolate myself in my own protective cocoon – my bedroom.
“Imagine a life spent avoiding human contact because you are too scared of the consequences. Imagine a life where the softest touch from your partner causes you to flinch with pain. Imagine a life where your care workers perfume makes you so ill you are unable to function for hours.”
Please click here to find out more about ME hypersensitivity
Brain fog- Cognitive & Memory Problems
My brain fog is ridiculous at the moment because I’ve been doing so much for ME awareness week. I’m really struggling to function through the confusion and constant veil of mist that clouds my thoughts.
This is another frustrating part of ME, and one that makes writing very hard at times. I often just can’t find the words. Spellchecker and my thesaurus app help, but some days I just have to give in to the fog and try again another day.
It’s hard to describe – you know what you want to say but it’s just out of your reach. Brain fog can be very frustrating, and trying to think through the fog can be painful and exhausting.
The confusion can get so bad sometimes that I don’t trust my own thoughts. I feel disconnected and it’s not only frustrating but also a bit scary at times.
This particular symptom is why I named my blog ‘A Journey Through the Fog’.
“It’s like trying to see your thoughts through thick fog. You know what you want to say but can’t formulate a sentence or find the right words to explain yourself. You often come out with completely unrelated words which make no sense. Although this can have hilarious consequences, it is extremely frustrating and at times, embarrassing and isolating. You feel stupid and that can knock your confidence too.”
Please click here to find out more
Activity & ME – The impact of stress on the body
My ME body has an extreme reaction to any activity, physical or mental. This video was taken after an hour long medical for my PIP reassessment. I was in my bed for the whole time, but the exhaustion caused from talking for this long, and the added mental stress of the situation caused severe muscle spasms and tremors.
This is how an ME body reacts to any activity, and it is also why treatments like Graded Exercise Therapy (GET) are harmful.
This is the real ME.
Our bodies do not react the way healthy bodies do, whether that’s in relation to exercise, medication, sleep or our environment – ME can cause some weird symptoms.
ME patients experience a worsening of symptoms following any activity. This is referred to as Post-exertional malaise (PEM) and it is a key symptom of ME that causes a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion.
The “crash” we experience following increased activity can be devastating and very scary. I have written about this particular symptom of ME in my post: What it feels like when I crash.
The Two Faces of ME – Payback
As I have mentioned previously, ME patients experience a worsening of symptoms following any activity. This is referred to as Post-exertional malaise (PEM), or ‘payback’ as many of us like to call it.
This means that if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for hours, or even days afterwards.
But people don’t see us on our bad days – they don’t see us when we crash. ME has two faces – the one people see, and the one which is hidden from the outside world because we are too ill to be seen.
These two photos were taken hours apart and they show the two faces of ME.
My best friend came round to see me, and for the first time in years I put some makeup on. I even sat up and had my photo taken. We chatted and laughed for a couple of hours – it was lovely.
But the payback for this added activity lasted days.
This is the real ME.
If you would like to find out more about what it’s like living with ME, please read my post: My Story – living with severe ME
Thank you for reading. Please share and help me raise awareness.
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