I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post.
There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms of CFSME?
Everyone with CFSME is different.
You’ll have a different life and lifestyle, a different level of symptoms and body and so it’ll feel different for you than it does for me – we have unique personalities, wants, desires, relationships, influences, commitments, attitudes, bodies and minds too.
Our biochemistry – the chemical reactions that happen in our bodies – will have basic similarities because we are all human but not everything is the same. Your biochemistry might be very different from mine and that changes things too.
Then there’s what CFSME is as well……quite a cocktail!
All of that adds up to a very individual experience of CFSME.
No cause = no pill we can take = cure
CFSME has no pharmaceutical treatment. Even though the cause is being slowly revealed in research findings, from all 4 corners of the globe, because of this there is no NHS treatment plan on offer that says: “take this, CFSME patient, it’s targeting your CFSME symptoms and will make them better.”
The UK NHS NICE guidelines indicate behavioural and psychological things people with CFSME can do to manage their symptoms and for some people with some types of CFS those will work.
But the furore about the research that forms the basis of this treatment confirms that it won’t work for everyone.
I’ve had it for almost 3 years now. What have I learned about how to manage it?
OK, so I’m not an expert but I have learned a few things on the way about how to best manage my symptoms. I blog a lot about what it feels like when symptoms happen, but there’s another side to that coin.
How do I manage MECFS?
Here are my rules of thumb:
I’ve pretty much got it down about how my body and mind feel in comparison to how they feel when I didn’t have CFSME.
It’s a bit like having a CFSME barometer and this helps me have some control over what I need to do and when.
I have moderate ME. People with mild ME and people with Severe ME will be different. I have declined towards severe ME and also improved towards mild ME, but my norm is moderate.
This helps frame my health in a way that helps me judge how I can expect to feel having CFSME. As I’ve changed since I’ve been ill it’s been like learning a whole new person. It sounds like this isn’t important, but it has been.
Knowing myself really helps me cope with my ME.
Although I’ve been a patient at an NHS CFSME clinic, I found that I started to understand what was happening when I talked with people who also had ME, made friends with people with ME and read information about it on the internet.
People’s blogs were a big part of this journey too.
It was soooo good to say: “I feel like this – do you?” and have an, “OH yes!!” back at me. I learned a lot this way.
What about doctors? Well, the GP who diagnosed me told me a little bit, a later GP said something about me having problems with immunity, but aside from that no-one in the medical profession has given me as much clarity about this illness as the charities websites and listening and talking and reading people that have ME.
Understanding what ‘it’ is, helps me frame my health, explain it to myself and other people too.
Also: because I understand it, it’s solidified my belief that this is a real illness and that it needs to be treated with care and respect.
Cause and effect
3 years in, I can see the cause and effect.
If I dance like a loon in my living room for 15 minutes to my favourite track, I AM going to have problems with energy afterwards.
My CFSME barometer tells me how long I can do active things for before I risk having problems (like I have been having recently since I started looking for somewhere to live.)
Mine are mine, yours may be different but knowing about CFSME helps me cope – it helps me use the right language when I’m talking to other people too.
Yesterday in my session with my counsellor, we talked about acceptance. She pointed out that I’ve never said: “poor me,” or sounded sorry for myself and we talked about why.
I worked in healthcare for a long time before I became ill and that’s helped with accepting what this illness is: it’s something that is real, is going wrong with my body and mind that has a time frame involved, symptoms, treatments, medication and it also an outcome(s).
Very early on this helped guide me to making choices – like fighting to be in the Support Group – to enable me to get on the path to recovery.
How to talk about your health
There are a whole realm of medical professionals involved with this journey too. Because I’d worked with them, I understood how to talk to them about being ill and how to address the power imbalance between ‘expert professionals’ and ‘non-expert patients’.
It made me question what I’ve been told critically, in an appropriate way.
Yes, sometimes I’ve got angry too – who wouldn’t be with the treatment we have to accept – but knowing how health works made a difference and it’s helped when I’ve read academic papers, medical research and the NICE guidelines too.
Choose what and who you listen to
I strongly feel that the NHS psycho-social model did not help me understand or accept the realities of CFSME.
Every time I presented the clinicians with a symptom or problem, they batted it back, attempting to make me think differently about it. I found this very unhelpful.
To this day, not one of them ever said: “you are feeling that symptom because this might be going on with your body.”
It felt like I was being gaslighted. But as I was desperate and ill, I listened anyway and then I went away and made my own mind up.
I hung on to my own understanding of ill-health and belief that CFSME is a physical illness and that helps, it really, really does, particularly when I am dealing with explaining it to others (doctor’s included.)
Try it – it’s your call
There’s a lot of dissent about NHS treatments for ME but I have tried various treatments for CFSME including; attending a CFSME clinic, lifestyle management and Graded Exercise Therapy and also antidepressants which were prescribed to me by my GP at the start of my diagnosis.
I now think trying all treatments was an important part of my journey over the last 3 years but at the time I was enormously let down by how effective they were at targeting and ameliorating my symptoms.
I did them because I was desperate and because they were the only things on offer to me within the NHS.
None of them have helped my symptoms, except Graded Exercise Therapy.
GET confirmed to me that I can do a bit of exercise and described exactly how much that is before I decline. It was useful in that way.
The things that help are:
You can’t put the CFSME genie back in the bottle. My CFSME is bad enough that I can’t work.
I did try to work at the beginning of having CFSME and it was disastrous for my long term health. Through that experience I know that I cannot remain stable and have the pressure of a working life added to the mix.
As a result I have fought through the DWP processes to be in the ESA Support Group. Applying for it and appealing the decision was hell, it made my symptoms much worse, it was a nightmare all round, but it was worth it.
Since I’ve been in the ESA Support Group I’ve started to feel like I can focus on my health and any recovery.
Don’t do much
Activity, whether it’s mental or physical affects me more than someone without CFSME – that’s one of the diagnostic symptoms of CFSME.
Therefore I’ve turned my life around so that I don’t do things more than I do do things, if that makes sense.
In order to do the things, I have to spend most of my time not doing things. Simples.
Getting a good night’s sleep is an essential part of my health-routine. It’s very clear if it is interrupted for whatever reason, my symptoms are a lot worse the next day.
In order to secure good sleep, I sometimes take 3.5 mgs of a drug called Mirtazapine at night. This is a second-choice antidepressant which was prescribed to me due to its sedating affects. I use it like a sleeping pill except it’s not addictive like many sleeping pills are.
Like many people with CFSME, I am very sensitive to medication. I find this small dose is all that’s necessary to act like a sleeping pill and secure a good night’s sleep. (Not my video, but a good example of what I mean.)
I don’t take it daily, nor am I taking it for depression but it’s there when I need it.
Oh and I go to bed at the same time every night as well. 9pm on the dot to rest. I’m usually asleep by 10:00.
Change my life pattern
I can’t go dancing any more, I can’t sing any more, I can’t go out in the evenings to the pub any more, I can’t do a lot of things that I used to do without having a massive decline in my health.
As harsh and awful as this sounds, I’ve learned that my life contains memories but not the reality.
Some day I might be able to do these things again, but at the moment they are in the lifestyle storage box.
I’ve got an energy budget. What do I want to spend that on?
I’ve worked out what’s important to me. What’s important to you will be different.
Once it’s ‘spent’, that’s it.
No, you can’t do that any more, it’ll make you ill. Easy to tell yourself, but how can you tell the people around you?
This is one of the other things I talk about with Crystal, my counsellor. There’s no easy way to do this, it’ll be a stop and start, but hopefully no tears and tantrums.
You need to tell the people around you about how you feel, what your illness is, how it affects you and what you can and can’t do and why.
This may be the biggest thing that you tackle but for me it’s been a crucial part of coping with having ME.
Other people need to understand that I have to protect my health above all.
Ask for help
Dependency vs independence is my big problem! I really have to work on this!!
I’ve learned to ask for help though, help with shopping, help with lifts, help with understanding things my brain-fog addled brain can’t compute, help with being taken to medical appointments.
Julie is helping me with housing and finances, friends help me with the things they can do well, I ask for help all the time now and it is both mentally and physically important to managing my illness.
Not everything though, I still do things I can do. This makes me feel like I’m still living as full a life as possible.
I have an arrangement with my friends and family that if we have plans to be social, I will let them know on the morning of the arrangement if I am well enough to do it. I say that right from the first time an arrangement is being made.
My CFSME buddies do the same. They cancel, I sometimes cancel, but it helps to manage people’s expectations and tell them about my illness too and why they may not see me for days or weeks on end.
R and R
Rest and relaxation is extremely important part of managing my symptoms.
I spend a lot of time each day simply doing things that other people might find really boring, like watching documentaries on You Tube or stopping everything to watch The News at lunchtime, but to me they make up the fabric of my day and keep me mentally and physically well.
Emotional health is as important as physical health. Find time to do some things that are fun and meaningful, I do, and it makes life worth living.
I see a counsellor every week who helps me manage my life and my illness. She also listens to all the problems and stressors in my life and helps me think about how to cope with them differently now I have this disability.
On that note: is there a problem in your life? Sort it before it makes your health decline. Problems and stressors are different when you have a long term health problem than when you are well.
Here’s a for instance; I find it intensely annoying when people come to my house and leave food wrappers and washing up for me to tidy up and deal with. I saw this as an insignificant part of life before getting ill, now I see it as one more energy-sapping thing for me to cope with.
I tell everyone to put their rubbish in the bin and ask them to wash up cups and glasses before they leave.
Recent research that is being published around the world indicates that the cause of CFS and ME are on the horizon.
Although at the moment we are all left feeling like 7 sacks of sh*te I still have hope that with patience there will be a pill I can take, one day.
Your rules of thumb may be the same, or different.
What do you do to manage your symptoms, I’d love to hear from you!
© Lindy 2015