Myalgic Encephalomyelitis is not just tiredness. To explain I want to share with you my experience with Myalgic Encephalomyelitis (ME). It can be frustrating when people don’t fully understand what Myalgic Encephalomyelitis Sufferers are going through. It hurts when others brush off this condition as just being tired, without realising the true impact it has on my life. It’s more than just fatigue; it’s about struggling to even move, to attend important events, or to say goodbye to loved ones.
Living with ME means being stuck in a body that won’t cooperate, enduring excruciating pain with every movement. It’s a daily struggle that can be hard for others to truly understand. I hope that by explaining it using the NICE guidelines, you’ll gain a better understanding of what it’s like to live with Myalgic Encephalomyelitis.
If you’re reading this because you care for someone with ME, I want to thank you for taking the time to understand the challenges we face. Your support means a lot. 🫶
Whenever you are feeling lost and need someone to talk all of my contact information is here Contact Me
NICE Guidelines for Myalgic Encephalomyelitis
You only need to go to the NICE Guidelines or WHO website to see the list of symptoms for people with ME. Most days I can not put one foot in front of the other, it feels like my body has just given up and no matter how much sleep I get or self-care I will still not be able to do it.
NICE – 1.2 Suspecting ME/CFS
1.2.2 Suspect ME/CFS if:
- the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks in children and young people and
- the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels and
- symptoms are not explained by another condition.
See box below
I often find it frustrating when I have conversations about Myalgic Encephalomyelitis with friends, family members, and even with my old HR Department, only to be met with a blank stare. It’s disheartening to see that lack of understanding. Many times, I’ve given up on the conversation because I didn’t have enough energy to explain the details of this illness for people to understand.
Why should I when you can see right in front of you that they don’t care? It may seem childish, but please keep on reading to find out just how serious this illness gets.
I understand that it may not be the most interesting topic to discuss, and I also realise that it can be difficult to change people’s perceptions when even those closest to us don’t take the time to understand the illness. This illness can be overwhelming and isolating, causing us to feel disconnected from those around us. It’s tough when people only see us at our best and don’t witness the challenges we face. As a result, our support circle may shrink.
Perhaps I’m just in a really bad mood, I understand that many people might feel like this is aimed directly at them, but it’s not. I just need people to understand this terrible illness. More than anything, I want people to support me. Hint, hint!
2024 so far…
So far 2024 has been a disaster for me, hopefully you have already read about my nightmare Christmas if not click here to find out more https://alishawhittam.com/holly-jolly-christmas/
The bad stuff is being pushed my way in excess this year and it’s only 17th February. Let me tell you more, so 28th January I just started to feel like I was worse than normal and over the next few hours anything I ate or drank left my body a little too quickly (sorry TMI) three days in the violent vomiting started but left after 24 hours unfortunately its friend didn’t leave with it.
It feels like a bad joke but add going to the bathroom 25/30 times a day to someone who is so exhausted that they can’t sit up. There have been tears and lots of them because I physically have nothing left, taking 8 steps from my bed to the toilet on a good day leaves me with nothing left so imagine how I’m feeling. Unfortunately, this isn’t the first time I have had this, the last time it went on for weeks and ended with me in the hospital, I had the medical team wanting to fit an NG tube. Not fun. More information on what an NG tube is and what it is used for can be found here https://my.clevelandclinic.org/health/treatments/24313-nasogastric-tube
I get the weirdest feeling just thinking about having this done so have pushed back against it any time it has been suggested, I understand that this may not be the best for my health but I just can’t do it.
Doctors
After speaking with my GP surgery on Monday I was told that I would need to call 111 which I finally managed to do on Tuesday, after going over everything with the person on 111 I was told that I would need to speak to my GP and that they would book a call back from my GP surgery. I still don’t understand why that happened or when they changed it but I do not have enough words in my head to do anything about it. After speaking with my GP he arranged to come out to see me.
Every single day since this awful bout of illness hit I know that I have needed to be at a hospital. The pain has been too much at times and based on the last time this put me in the hospital it was pretty serious. I forget so much but I do remember that it was something to do with C Diff. I was put into a private room and anyone who came into my room had to be fully protected, a face mask, plastic apron, and gloves and this all had to be disposed of before they left or as they left my room (this was before the Rona times)
I just remember thinking that I felt like I was in the scene in ET in the medical tents but I was the one being poked and prodded, not fun.
Going over everything and seeing a medical professional insist on a plan of action which was everything you knew should have happened at the very beginning is terrifying It’s even scarier hearing from them what you worry about the most. Let me explain, I know I’m not the right weight for my height, I know that my body isn’t at peak physical fitness and I also know that having something like Fatty Liver already I should be taking all of this incredibly seriously and using it as a wake-up.
No chance
Every day of my life I live in a serious amount of pain which is managed using Morphine, Gabapentin, Amitriptyline, Oramorph and more, pain is not the issue here. I know the conversation is inevitable but I’m sorry, no. you have no chance of doing investigations using cameras in places where a camera should not need to go in 2024 I’m Out. No Chance, No Way. If you want to put one of those inside my body you can do it under sedation.
Many years have now passed since that long hospital stay and I still have not had any of those investigations done, I have sent emails to patient services in the hope that they will allow heavy sedation, and I have emailed the consultant many times each time getting nowhere until I just couldn’t do it anymore. So hearing Cancer screening as all of my symptoms match is enough to turn my blood to ice and all of the internal worry begins.
Wake up call
Yes, I need to take this all much more seriously, I get that I do. Every single day of my life except very few days I spend my days completely bedridden. Last year I left the house maybe 8 or 9 times, that’s in a year! You are probably thinking why does this matter, let me explain I have roughly 52 days a year available for me to be able to attend doctor’s appointments and dental Appointments, maybe even have a little fun. Due to this illness, I need Graham with me to be able to go anywhere.
Grahams’ Days off -The 52 days I referenced are Graham’s weekdays off, yes he gets holidays but most health issues are emergencies which he will try to take holidays for. His other day off is a Sunday.
This year already I have 4 dental appointments booked in. I also need to see the hospital over my hands, plus an X-ray booked in after my arm never healed properly after the last fall out of bed. Grahams’ Mum also needs his support, so on his days off he also needs to take his Mum to her hospital appointments.
The biggest hurdle in all of this is me, I know that to be able to attend any appointment on the days that Graham has available I have to have an incredibly good ME day.
ME and Waiting for the results
In the meantime, I’m waiting on these results but how am I supposed to act, how do I pretend everything is normal when all of the signs point to something serious?
Managing an illness which people don’t take seriously and worse than that they don’t take the time needed to find out more about Myalgic Encephalomyelitis hurts but it’s also exhausting. Every day of my life I live with an illness that has taken everything that made me Alisha.
ME Symptoms
So if Myalgic Encephalomyelitis is not just tiredness what is this awful illness? Below I have formed a comprehensive list of ME Symptoms taken from many sources across the internet.
You will not suffer every one of these symptoms, however –
- Fatigue
- Problems with sleeping
- Post Exertial Malaise – feeling an increase in all of your symptoms after a mental or physical activity
They are the core symptoms that a Dr or Consultant will look at. You have to be suffering from these symptoms for at least 6 months (this amount of time varies all over the world) Your Dr or Consultant will take a detailed medical history including your mental health. You will be tested and ruled out for any other illness that displays the same symptoms as ME.
- Fatigue very different to feeling tired(you have nothing left to give)
- You feel much worse after any type of physical or mental activity – PEM
- No amount of sleep helps will make you feel refreshed
- Problems with Memory/Concentration & thinking
- Intolerances or sensitivities to smells/sounds/heat/cold and light
- Muscle twitches
- Flu-like symptoms
- chills and night sweat
- irregular heartbeat
- anxiety or panic attacks
- numbness, tingling, and burning in the hands, feet, and face
- eye pain
- a low-grade fever
- vision problems
- Joint pain without swelling or redness
- Headaches, either new or worsening
- Tender lymph nodes in the neck or armpits
- Muscle weakness
- Shortness of breath
- rashes
- high-stress levels
- saying words incorrectly
- tinnitus
- extreme symptoms of premenstrual syndrome (PMS)
- lack of sex drive or sexual impotence
- hair loss
- unexplained weight changes
- spatial disorientation
- difficulty walking
- difficulty moving the tongue to form words (my tongue swells)
Living with Myalgic Encephalomyelitis
This illness is not easy to live with and if you are going to manage this illness you have to listen to what your body is telling you. For a long time, I pushed against this illness for fear of losing my job when I should have been giving my body the rest it so desperately needed.
If we look at statistics I already know that this illness is my life now, the research shows that this is not going to get better. So now with age, being overweight and a body which is only going to get weaker with time I’m not going to have it easy. This made me think that right now is probably the easiest this illness is going to be.
The wait begins
So now I have to wait for the results from the tests they have already carried out. I also need to have blood done to get a better idea of what is going on.
So it begins again and chances are I will have to be referred back to the same team who wanted to carry out those awful investigations. I will always refuse to have those investigations carried out while I am conscious, it’s just not happening.
I long for a more streamlined system one that treats the patient, not just the symptoms. I long for a system where I could talk about my health with one person. When you are severely sick lots of appointments along with the worry they cause leave people like me with nothing left to give. To top it all off and wrap it with a big bow our boiler has packed up. Leaving my home a little cold until we can arrange/afford to replace the old one. Not a bill we needed in January 💷💷💷.
Myalgic Encephalomyelitis | My thoughts on Dragons Den cure for an illness with no cure
Thank you so much for reading this post I appreciate your support so much 🫶
Below I have included a link to my latest YouTube video all about my life with Severe Myalgic Encephalomyelitis and my thoughts on the Dragons Den situation.
Visit my channel for more of my Youtube videos – https://www.youtube.com/@AlishaWhittam
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