My name is Char, I'm in my late thirties and live with my little sister who has become my full time carer.
I have quite severe Myalgic Encephaymyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). It is a debilitating neurological condition that affects all body systems. Science hasn't figured this one out yet, so patients are often left to muddle through on their own. Often isolated in darkened rooms because light, sound and interaction with other people can make all our symptoms flare up to sometimes unbearable levels.
The main symptoms I have had to deal with are widespread pain, exhaustion upon the slightest activity - like brushing my teeth or walking to the kitchen for a glass of water. Weakness, shaking, severe cognitive impairment, memory loss, heart palpitations, light and noise sensitivity, numbness and tingling in my limbs. These are just the most commonly present symptoms, there are many more random symsptoms that come and go daily.
Before I was diagnosed I had a wonderful job as a teaching assistant. I worked one-to-one with children with special needs and absolutely loved my job. I also did tutoring and babysitting after hours and helped manage a few after school clubs for the children.
I had also recently got back into doing Taebo and had taken up beginners dance classes for adults. It was so much fun! I had also got a bicycle, after many years without one, and was looking forward to getting back into cycling regularly. In fact the last exercise I did was the day I fell ill, I was in Italy and went for an early morning cycle in the countryside with my Dad.
Since that day I have been quite severely ill and mostly housebound and bedridden for long stretches. That holiday in Italy was Easter 2015, I did attempt returning to work a few times in April and once in May, but was only ever able to manage a few hours before I'd either start feeling weak and falling asleep in class or get horrific headaches and would have to go sleep in a darkened sensory room until I could be taken home. I lost my job that December after it became very clear that I was not getting any better, but actually getting worse.
I believe I was probably ill for at least a year prior to the onset of my severe symptoms. I had had intense shooting pains throughout my body for months in 2014. At first they were random isolated shooting pains. One in my hip one day, then one in my thigh another day, and so on.
I didn't pay too much attention to it as it wasn't bothering me much. But as time passed, they became more frequent and then almost permanent. Doctors did so many tests and couldn't find any reasons for my pain, so they just sent me home with painkillers. It's a scary experience to have your doctor look concerned and confused and then tell you "This is frustrating, I don't know what to do next".
When I fell ill during my Easter holiday in 2015, I thought it was just another ear and throat infection, I had had a few of them already in recent months. I had lost my voice while out cyclilng with Dad and my
ears were terribly sore. But the antibiotics didn't help, I kept getting worse and by Easter Sunday I knew there was something wrong.
It took 5 months of blood tests and urine tests, done and redone, and then a psych evaluation before I was given my final diagnosis of CFS. I had had about 6 doctors by that stage and 2 of them had said they suspected CFS although they wrote Post Viral Fatigue and Lethargy on my sick notes. They referred me to a Chronic Fatigue Clinic where I was offered CBT.
The minute I first was told over the phone that my first doctor thought I had Post Viral Fatigue Syndrome (PVFS), I googled PVFS and ended up finding articles about ME/CFS. I found a support group on Facebook within an hour and I am still in that wonderful group of supportive people.
Patients were my biggest help because my doctor didn't really know anything about the condition and gave me damaging advice, but these patients helped me navigate this condition better than any doctor could.
Unfortunately this illness is so misunderstood and doctors are grossly uneducated on the matter that it is hard to trust their advice. The internet has been a lifesaver in this case.
I have now reached a place where I'm quite stable most of the time although living at an extremely reduced activity level and spend most of my time reclined or lying down. But there was a time I was completely bedridden for months, only walking a few steps to the toilet and that alone was like climbing a mountain in a thunderstorm.
My flares are an almost daily occurance even now. They are not always predictable and can range in severity. My most common flares now are usually the mild form with an increase in general pain and light sensetivity.
When I shower or go out for an appointment they will be much more severe and can last days or weeks and my most severe symptoms with change daily. They can include shaking, numness and loss of function of my arms and legs, my heart rate soars or drops, difficulty forming sentences or understanding English and inability to make decisions. Also severe sensitivity to light and sound so I am usually confined to my bed in a dark, silent room during these flares.
I can become really weak and will be unable to move my own body, pull up my trousers, sit up or lift a glass of water. The only thing to do is lie there and wait it out. Once the body has had total rest in silence and darkness for a few hours, I am usually able to sit up again, reclined.
The tingling, weak grip and confusion might linger for hours afterwards.
ME/CFS comes with many forms of pain too. There are the stabbing pains, to me they feel like a thin metal rod is being pushed into my joints - usually my hips, knees and wrists. There's the burning muscle pain - this is the type of pain an athlete would have after a marathon. It's caused by a build up of lactic acid which we get from simply standing up or walking a few steps.
There's also the aching - I often describe it as period pain in my legs or arms. It's a deep and uncomfortable pain you can't reach. Heat helps this one, so I love hugging my hot water bunny. One of the most frustrating pains is the skin sensitivity. This is like having a fever - your skin hurts if touched or rubbed against even by fabric like a tshirt. A fold in my sheets can sometimes feel like I'm lying on marbles. It makes getting comfortable very hard!
There are also the unpredictable pains like headaches, earaches, sore throat and painful, swollen lymph glands all of which come and go without warning.
A flare can last anything from a few hours to months. I've had a 24 hour flare straight after a shower and I've had a 5 month flare after an outing in my wheelchair. Although I generally have a one/two-day-long flare starting on day 2 after my showers and outings.
Those long and intense flares are unpredictable and random. None of them were really expected and sometimes when I've expected one, it never came. The one thing that is guaranteed with ME/CFS is the unpredictability of symtoms. Every day is a surprise. Some days every hour is a surprise!
The best way to manage these flares, in my experience, is to have total rest. That means lying down, keep warm and hydrated, darkness and silence. Just breathe. Wait. Sleep.
My main triggers for the flares are exertion, whether it's physical or mental or emotional exertion. So stress and excitement can knock me out and cause as much pain as taking a shower.
That's why it is important to be aware of any negative relationships or situations in your life and try to neutralise them or avoid them. We need to stay calm and relaxed to keep symptoms from flaring up to horrible levels.
I was initially on a lot of medication. I then settled on Naproxen and Amitriptyline for pain management, but have since come off all medication and now use diet and supplements to keep my pain levels at almost zero most of the time.
My favourite supplement for pain relief is MSM powder. That along with the ketogenic diet has almost eliminated my pain, except during flares. That's when I might take a Naproxen.
Other supplements I take daily to help with energy and inflammation are: Vitamin B12, Acetyl-L-carnitine, Co-enzyme Q10, Vitamin D3, Vitamin C, Omega 3, Magnesium.
I also take Potassium and Sodium (need to take electrolytes on the ketogenic diet and it helps with heart rate issues caused by ME/cfs).
My tip for anybody suffering this life-draining illness is to listen to your body. Don't push through the symptoms because this ME monster gets stronger and more debilitating the more you fight it. So my motto is "don't do your best, do less".
If you do less than you know you can, you will stay in your energy envelope and will lessen then potential payback. If you're constantly pushing your limits then you will constantly crash and payback will be painful and longer than if you stay within your limits most of the time.
I am able to feel quite good quite often thanks to staying within my limits most days. The reasoning is that although I could do more now, it will mean that I will be less able to do things tomorrow and maybe even the day after, so it's not worth it. Keep activity levels lower so you can have more days that are productive.
This illness has impacted my life in many ways. Although it might seem quite negative, there are also some silver linings which I am grateful for: I have had more time to do art which was near impossible while working. I am blogging again, something I had to give up while too busy with teaching and lesson planning.
I have met some amazing people online and am so grateful to be part of such an incredibly supportive community. My relationship with my sister-carer is so much stronger now. I have more faith, hope, inner strength and peace than I ever had before.
Unfortunately being so severely ill also means I have not been able to work for years, and I loved my job. I have not been able to attend church either, although I'm grateful for live streaming church services online! I rarely leave the house now, even just grocery shopping or to see friends.
This has had an impact on my relationships. For one, I have realised who my true friends are and who I can really rely on. There are only a handful of people who make the effort to reach out and interact with me after 3 years of illness.
I am not resentful or upset about it though, I understand that people will have their circles of friends, people who are present and an active part of their life now, in a way I cannot be. They have jobs and social events to attend. It is natural that one would fall further down the list of priorities the longer you are out of their view.
That is why it is so important, once diagnosed, to find support groups online and get plugged into a community of people who understand what you're going through because most of your old friends will not understand and will eventually drift away.
Before I fell ill I had no idea about this illness. That is why I am now so passionate about raising awareness and supporting those who are newly diagnosed. My life, my illness even, has a purpose if it can help one other person - and I am grateful that it already has.
I stay positive and hopeful because of my faith and also because of all the amazing warriors (patients and their carers alike) who are tirelessly working to do research and raise awareness to get recognition for those of us who cannot do it ourselves. They are an inspiring bunch of people!
My hope for the future is that ME/CFS will be taken seriously by governments and doctors. That they will allocate sufficient funds for proper biomedical research and find a cause, treatment and cure for this illness. That newly diagnosed patients will not have to struggle as much as my fellow patients have over the past 30 years. I am very excited about the future for ME patients!
For me personally, my hope is that I will reach a point in recovery where I am able to be active again, so I
can be more productive daily and help more people who cannot help themselves, preferably in a more practical way, not just through advocacy. This illness has opened my eyes to the struggles of the isolated millions who really need able bodied people to fight for them.
- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -