As part of a series of posts to raise awareness about chronic illnesses this month, today, I thought I’d talk about ME/CFS, Myalgic Encephalomyelitis or Chronic fatigue syndrome. Thousands of people with this condition and others alike have been isolated for years and awareness week for ME could not have come at a better time. Every cloud has its silver lining: through the grief, pain, loneliness and suffering we are experiencing during these awful times, I can only hold onto the hope that things will be better. COVID-19 has formed strong communities, empathy and understanding. It has identified just how many people are considered ‘at risk’ and ‘extremely vulnerable’ people are helping their neighbours whilst forming new relationships with people who may ordinarily be housebound. I can only hope support continues.
Lockdown is really starting to enable everyone to understand just how isolating life can be when you are not able to take part in normal daily activities many of us take for granted. I have a great social network and would not say I am isolated from society, however I do spend long periods of time on my own, in bed, poorly or unable to do the things my peers can do. People seem to be gutted they can’t go on holiday, to the gym or clubbing. Standard?!? Now shops are shut, theme parks aren’t running and bars are closed, I can’t help but smirk a little. Working from home really wasn’t that hard. Home learning can be done- it is not ideal and took some getting used to, but it has been possible. As the world has found itself forced into a new way of living, I feel an intense buzz in my stomach. I can feel the empathy people will feel when things begin to return to normal and I cannot wait for some of the changes to occur which will benefit the disabled community so much. You now cannot tell me ‘NO’ As I will not take no for an answer. It has been proved in now, during these unprecedented times that anything is possible if we come to together. People will sadly continue to grieve post Covid-19. The ability to work from home could help the healing process. People with disabilities who have always been sick may be understood a little more. Maybe the inaccessible world will become a more accessible place- we can only dream. With social distancing measures taken and virtual tours anything is possible to boost quality of life. I refuse to stop rambling on about this topic until reasonable adjustments are made to support the lives of those considered the minority- the most vulnerable in society and not just the majority.
Okay… Back to telling you the details of ME!
Many people with ME have a comorbid condition (more than one diagnosis, such as a sleep disorder in addition to their CFS)M.E/CFS is a invisible illness which causes long bouts of intense fatigue. Ironically- it has taken me a while to write this post as I’ve been so fatigued and writing posts makes me soso tired! ME is characterised by a range of unexplained neurological symptoms as well as muscle pain with intense physical or mental exhaustion, frequent relapses and fluctuation of symptoms as well as cognitive difficulties. Many symptoms affect many of the bodies systems.
There are around 250,000 people in the UK alone who live with this long-term (chronic) illness to different severities.
Myalgic Encephalomyelitis is categorised into ‘mild, moderate & severe’ by professionals. Weirdly I’ve never been told what type of ME i have but I would guess I fit somewhere between moderate and severe.
People with mild CFS/M.E are mobile and can care for themselves. They can do light domestic tasks with fatigue and difficulty. Most people with mild CFS/ME are working or in full time education, but is likely that to maintain this, they probably have little social commitments. They often take days off due to fatigue or use their spare time coping with the after effects of the rest of the week.
People with moderate CFS/M.E have reduced mobility, they can walk short distances before becoming very fatigued. They are likely to be restricted in all activities of daily living, including cooking, cleaning, washing, although it is likely they have short periods of more energy. They will usually be able to do one out of 3 household activities in a day for example. They have usually stopped work, or their studies and need rest periods, often sleeping in the afternoon for one or two hours. People with moderate M.E are likely to have poor quality sleep at night.
People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often housebound or have a severe and prolonged after-effect if they take part in activity. They may spend most of their time in bed, and are often extremely sensitive to light and noise.
All forms of M.E can have a significant impact on an individual’s day to day quality of life and not just on their health.
ME / CFS is not just being tired.
Ahhhh… the ‘I’m tired too’ ‘everyone gets tired’ ‘I had a really long nap today’ (usually an hour). ‘so you’re just tired all the time?’ ‘have you tried yoga?’ ‘Why don’t you try and push through- if you’re tired anyway?’ ‘Have you had a piece of lettuce’ ‘Have you tried going to bed earlier?’ ‘It’s because you use technology?!’ ‘My aunties grandmas cats uncles bat had ME and they got over it.’ ‘My Dogs friends uncle had ME, turns out it wasn’t ME, it was XYZ and they died.’ cheers pal. These comments. HAHA I am really really trying to learn that everything is relative and for someone who does not have a chronic health condition may not understand. They probably are tired too. But it’s more likely to be as a result of something and temporary as opposed to long term unexplained fatigue. Their really long nap could be unusual to them and may well be very long. No body is perfect and sometimes I have to remind myself not to be so bitter. I understand people are only trying to help therefore I don’t discourage comments, but somedays… ahh the frustration. On the plus side of having ME, I definitely am exceptionally emphathetic and if I see someone bleeding, crying, in pain etc… I have lots of ways to help fix it. I guess sadly, having a long term health condition, things that help fix an able- bodied persons’ ailment don’t really work for you.
How can I support my friend/ family member with ME?
Whilst I like to remain as independent as possible, sometimes I can accept I do need help. Little things such as hanging out my washing, answering the doorbell or going downstairs to get XYZ can help me preserve my energy. My friends are pretty amazing and most of them know my hospitality skills are no longer up to par- they let themselves in the front door so I don’t have to go down the stairs and they help themselves to food drink etc from the kitchen. Helping people with ME does not always have to be through practical things- many of us have care support for that.
Regularly staying in contact with your friend or family member who is struggling is important, a text or card can really brighten their day. People with chronic health conditions can often feel left out, unwanted due to not being ‘fun’ or sad they were unable to join in. Acknowledging their limitations whilst encouraging and supporting them is a great idea. Sometimes my friends come over and we nap together or sit in silence… on days I feel rubbish this is all I need! Being able to watch my energy limits and help me pace is also super useful. If I have a burst of energy I tend to go for the ‘lets go clubbing, shopping, swimming and to the pub’ all in one day. Accepting my moment of madness and understand I rarely have energy to do these things so doing one or two could be fun but also reminding me to pace myself. ‘CALM DOWN LORENZO YOUR BODY DOESN’T WORK, LET’S DO ONE OF THESE THINGS EACH DAY INSTEAD OF ALL TODAY’ kinda thing.
ME is not caused by laziness. Apart from the obvious ‘chronic fatigue’ this is not the only symptom which accompanies the diagnosis of CFS...
Symptoms include or can be categorise into:
Feeling generally unwell and having flu-like symptoms, sweating, tender lymph nodes, sore throat.
This can often flare and last months.
Pain- aching, nerve pain, pins and needles, muscular, tendon pain, migraines, twitching muscles, abdominal pain or stomach cramps, bowel problems, back pain.
If pain is more significant as a symptom than fatigue- here is where fibromyalgia may be recognised. Patients with no pain symptoms are said to be in the minority. Although pain is definitely present in patients with ME, it is usually a secondary symptom to fatigue. Many patients do have have fibromyalgia and ME. The diagnostic process here can be hard.
Sleep- insomnia (struggling to sleep), hypersomnia (long periods of daytime sleepiness), Light or restless sleep, poor sleep hygiene or sleep reversal (your body clock works backwards.)
A lot of the support available for people with CFS involves assessing their sleep patterns.
Brain- problems with concentration, memory (“brain fog”), short- term memory issues, speech and language issues, inability to plan or organise, a poor attention span.
Commonly, those of us with ME struggle to manage our short- term memory- losing items, forgetting appointments, being particularly slow with tasks, I too also have conversations I have no recollection of due to fatigue. Many of us struggle with concentration and have poor attention span.
Nervous system- hot flushes, feeling cold, blood pressure issues, dizziness, intense sweating, poor circulation or bad balance.
I’m a sweaty beast!
Digestion- Nausea, IBS, loss of appetite, indigestion, wind, bloating, cramps, constipation and diahorrea.-
Increased sensitivities- food intolerances, odours, noises, lighting, alcohol or drugs.
The main allegens being Dairy and Wheat.
Autonomic: lightheaded, disorientation, feeling faint, palpitations, fainting, sitting to standing, laying flat to sitting blackouts.
Many people with ME also under go autonomic testing for abnormalities.
PEM or Post- exertional malaise: The exacerbation of symptoms after activity. The worsening of symptoms after partaking in any minor physical or mental activity. This can be anything from taking a shower to walking to the post box or having a phone call with a friend.
Feeling intense pain or fatigue after any form of activity or social interaction. A key diagnostic feature of ME/CFS is to do with how activities effect you- whether you’re symptoms worsen after activity etc. Post exertional malaise can be provoked by very minor exertions. (a great example of this would be, I had to post some flyers through doors on my street, no more than 15 houses- I walked… by the time I got home, I was absolutely wiped out- I had a six hour nap then went to bed at 8pm sleeping the night through till 10:30am. I continued to feel fatigued from this for the following two days & suffered pain in some joints. Including my fingers?!
MY M.E. STORY:
For about six months we assumed my fatigue was due to my depressive disorder, as we stabilised my mood with CBT and a variety of other therapies, as well as medication, it became apparent, as my mood increased my fatigue levels did not.
I took 60mg of Fluoxetine and 0.5mg of Flupentixol. ( I have put the specific amounts that worked for me, after a lot of trial and error, for any of you who may be struggling with the idea of medicating your mental health condition.)
I had hypersomnia due to my depressive disorder and suspect this could also have contributed to the hypersomnia i experience with my ME. I am still waiting on a sleep study to look into sleep disorders/ idiopathic hypersomnia. My new ‘record’ for hours spent asleep is 28 hours followed by 6 hours awake and 15 hours asleep prior.
Some Medical Professionals believe the condition to be brought on by a bout of illness, injury or viral infection, I had laryngitis about 5 times in the same year I broke my coccyx and developed the symptoms of intense fatigue. The only sensible link to how I may have found myself with ME would be here.
I got diagnosed in Luton just before I started university luckily this was for my Disabled Student’s Allowance…. Moving towns should be simple but unfortunately not- I have spent two years chasing a referral to the CFS clinic and a re-diagnosis from a specialist in Brighton in order to get the right support. I’m due to see a specialist any moment now…. oh coronavirus
No… alarms do not wake me up. I need to be physically shaken some days or woken multiple times. If woken by someone it is unlikely I will wake up. On days where my fatigue is particularly bad, my mum could wake me four or five times and I have no recollection of her even trying to wake me.
Help understanding CFS/ME:
MEassociation have amazing in depth articles into the life of those with ME- they do absolutely great work in the UK to support people with ME of all ages & all severities. They raise awareness, help run charity fundraising events and give emotional support to its members. Many GP’s do not feel confident in diagnosing ME or recognising symptoms and they therefore seek advice from organisations such as MEassociation. They work exceptionally closely with their own scientists and doctors. They have an incredibly informative website if you would like to find out anymore. Their support available is exceptional and so very detailed!
ActionforMe Have amazing guidance which is very clearly explained to help aid patients with ME explain their condition to others. They offer help in navigating the healthcare system as well as school and work with ME. Their website is particularly easy to use which as someone with the condition I find this very important. Questions can be answered simply and quickly. Many of you may be intrigued to learn more about this condition, I have linked the website to ActionforME above.
MEaction.net They aim to advocate, inspire, reach and connect. They have great information with regards to current investigations into the condition. Put a lot of work into advocating for those with the condition including discussions with parliament. They do work in internationally to support people with the same condition across the globe. For those of you who are interested in learning more information on the work they do, I have linked their website.
I cannot applaud these three charities enough in the help they have offered me in a crisis.