This is a follow up post from yesterday, which was about how I manage my sleep problems using a prescribed drug from my GP called Mirtazapine (MTZ.)
MTZ is an anti-depressant and with the history of ME being mistaken for, or treated as a primary mental health condition, I wrote yesterday’s post knowing it is a loaded subject for the ME community.
I have a background of working in health, so I come to this subject both as an ex-clinician but also an ME patient.
When you aren’t getting enough of the right type of deep sleep it has an emotional affect. Sleep and emotional health is linked. This is why I now protect my night time sleep at all costs. It helps me to heal my ME-battered body too.
This is a big subject because talking about treating symptoms of emotional ill-health is a big subject, but I’m going to take a stab at it today.
Clinical depression is not a done-deal if you have CFSME
Before I carry on, it is not a done-deal that you’ll experience depression when you have a dignosis of CFSME. I am going to quote Dr Sarah Myhill now:
“Depression is not a primary part of CFS, in fact I am impressed how well psychologically adjusted many of my CFS’s are.”
Thanks Dr. M! I think having any illness is a lot to take on board and it’s nice to hear that she sees patients who are coping well with their illness.
CFS isn’t ME though, and ME has a host of other symptoms that CFS patients won’t experience.
Some PwME will also experience clinical depression
Some people with CFS or ME will also experience clinical depression.
It’s really important to recognise it when it’s happening because clinical depression is a serious illness, it needs treating and it is every bit as important to tackle if you have CFSME.
The 6 million dollar question – how do you know whether it’s the ME making you feel emotionally wrong, or depression?
I’ve talked about research into emotional health issues and ME in this blog in the past because part of my personality and how I cope is to seek out answers to questions I have about what’s happening to me. Also, since having ME I’ve experience huge problems with paralysing anxiety since I’ve been ill.
Our bodies and minds are linked and are out of kilter by ME.
Yes, we aren’t certain about exactly how or what is going on yet, but as the body and mind are linked, and the chemicals in our brains that are essential to maintain good emotional health are also affected,
Having ME in itself, can affect our emotional health – it’s biology as well as psychology.
For instance, after having an infection, our bodies deplete serotonin, the brain neuro-chemical I talked about yesterday. Serotonin is essential to maintain good emotional health. If ME is an illness where our bodies constantly react as if they are fighting off an infection, our serotonin levels could be constantly depleted as well.
That might help to explain why for some of us with ME, we experience emotional health issues along side it, like depression.
What does depression feel like?
Clinical depression feels awful, hopeless and as I said yesterday, like you are in a painful black emotional hole. It’s horrible, it’s impossible to simply ‘buck your ideas up and get out of it’, doesn’t improve over time and it isn’t something that gets better without help, support, intervention and treatment.
The big problem for medical staff is that depression can have some of the same symptoms as ME; like anxiety, lethargy headaches, sleep problems, digestive problems, anxiety and mood fluctuations.
This is why poorly-informed GPs often mistake the symptoms of CFSME as depression and it can also be frustrating when you are trying to gain treatment for one or both.
However it doesn’t mean that if you are experiencing really dark thoughts or any of those symptoms, you should automatically think “it’s the ME.”
It might not be, which is why you really must talk to a doctor about both IF you experience those symptoms.
If you are thinking about going to see your doctor, it’s worth knowing in advance that GPs can do one of 2 things when a patient presents with emotional issues: prescribe medication and / or refer to NHS Mental Health Services.
In the case of ME patients, if you have a local ME clinic, they could also refer you to psychological services there. That means being treated by a clinical psychologist who practices Cognitive Behavioural Therapy.
There is a lot that happens biologically, psychologically, socially and emotionally as a result of having CFSME, so what DO you do, if you realise your emotional health is starting to decline?
Since having CFSME I’ve been to some very dark places emotionally, places I’ve never been at before and I’m not alone in this.
My friend CB has battled serious depression throughout her journey with ME that has left her suicidal – her treatment is regular psychotherapy. Mine is counselling and the things I also do which are listed at the bottom of this post.
Tell someone about it
It’s hard when you are experiencing something so painful and wrong to talk about how you feel and couple that with ME symptoms, it can feel insurmountable. However it’s really important to talk about it and tell someone how you are feeling.
There are really good phone lines that can help if you don’t feel you can talk to a family member or a friend. It might seem like the biggest thing in the world to simply pick up the phone, but it’s the start of getting better. They offer help, support and advice, start small if you feel comfortable doing that. A good listener will be patient.
A list of phone lines are in the link in that text.
Sometimes talking things out can make all the difference, can improve how you feel in itself. Not every depression needs medication, some depressions improve by talking with someone who understands and can help you that way.
That’s why having friends and family are so important. Feeling loved and listened to helps to feel supported and helps heal.
Skype counselling / phone counselling
Some counsellors and therapists offer Skype or phone counselling if you are worried about travelling to appointments and the affect on your ME.
ME Clinics can also offer phone appointments too. So do GPs, by the way. You can call your doctors surgery and ask them to arrange a phone appointment.
My counsellor knows that I might not be able to attend every week. She always understands if I have to cancel appointments because we’ve discussed how my ME affects me.
What also helps?
I’ve blogged about a ME-buddy who used CBT at an NHS ME Clinic to help address her ME symptoms which were influenced by everything in her life, including her relationships which in turn affected her emotions. She said it really helped.
The CFS Management Group I attended went through some of the psycho-social influences that can negatively affect your symptoms of CFS and ME as well. That includes the emotional.
On the ME Charities websites and in people’s ME blogs, there’s so much great information about ME and our emotions.
I’ve found it really useful reading other people’s blogs because it makes me feel I understand what’s happening to me and that I’m not alone with how I feel.
It’s easy to do that from a computer while I’m resting or in bed too. 🙂
GP treatment for emotional health
The first port of call for most people when they aren’t feeling well is to make an appointment at their Doctors.
Both me and CB have been to our GP’s to get treatment for our emotional health as well as going to the GP about our MECFS.
For both of us, the outcome was an immediate prescription for anti-depressants which in both of our cases we couldn’t tolerate (tolerate is a medical term which describes how well your body reacts to medication or treatment) a common problem for patients with ME.
The medication issue can be an issue for ME patients. In yesterday’s blog post I talked about negotiating – or self-advocating- with your GP about trying lesser doses of medication if you are sensitive to them.
Doctors will always aim to prescribe what is called a psycho-active dose of anti-depressants. You are within your rights to adjust a dose to half or quarter doses to help you acclimatise and take them.
Me and CB were not referred to NHS mental health services as the waiting list was too long in the area we lived in and we needed help immediately.
Both of us ended up accessing private counselling which 2 years later, I am still doing because I find it incredibly useful to help me work through life stuff, relationships, stress and problems I have because of having CFSME.
The pills don’t work, they just make you worse…(?)
From personal experience I completely sympathise with anyone with ME who is struggling with emotional issues enough to visit their GP and then finds that the pills they are prescribed makes them far, far, worse.
Then there’s the waiting list for NHS counselling or therapy and the problems with distance to travel there and back too.
It really left me in such a difficult place, feeling that there’s nothing out there that can help my emotional health without making my ME-health decline.
Feeling, as I did, that I was in a position of having to ‘simply live with’ one in order to maintain health made me feel trapped and that I was in a double-bind, I sought out private local counselling.
My anxiety was so paralyzing that I jumped out of my skin at the slightest noise, I avoided speaking to people, answering the door and my thoughts were scattered too. I needed help!
Starting to talk to my counsellor was the first step for me
Since doing so, over the last 2 years here’s what I’ve discovered about my emotional health and my ME-health too:
When I’ve felt most emotionally unwell it’s always been as a result of physical or emotional stress, doing too much physically, or because of emotional pressure or upheaval. Once I started to tackle those things, my emotional health improved.
Sleep is a big part of that equation – yes, MTZ is part of how I tackle my ME symptoms. I take it when I need to and having a good night’s sleep quietens down my ME symptoms the next day. Getting a good night’s deep sleep also affects my moods. I feel mentally and emotionally more positive and optimistic than I do when I can’t sleep.
My life has a pattern to it –My body is used to the same timetable every day. Lots of rest, a good night’s sleep, only a couple of hours of high level activity and really importantly – room for the things you enjoy and like and have fun with.
Find a way around social isolation. I make sure I have time and space for the people in my life who are important to me. I invite them to my place usually, even for short social stints it makes me feel much, much better emotionally. When I do not ‘see’ them, I talk to them by text, messaging or email. Feeling socially connected is extremely important to my mental well being.
I avoid any situation where I am forced to do more cognitively or physically than I can cope with – I call this Personal Pacing. I have worked out how much I can do physically and mentally in a day before I decline. No-one’s told me this figure, I’ve worked it out for myself. I stick to this routine like glue. Mess with this and I start to feel bad, adrenaline kicks in and I am back to experiencing anxiety again.
I can’t work – No, I can’t. No matter how much the DWP tells me I could be fit to work, I know I can’t. I’ve fought to be in the Support Group and have my ducks in line to fight again when it happens. I’m ill.
Find one hobby you like and do it – I can’t dance any more, I can’t sing any more but I can cook, I can write and I can imagine and create things in my mind. These things are the gold dust that make my life worthwhile.
ME can improve – I tell myself this every day. We walk together, helping, listening and supporting each other while we wait for the cure. This helps.
I see a counsellor – privately – to support me with my emotional life and the changes I need to make to adapt to having ME – this makes me feel I am being listened to, understood and supported in my life. This is really important and has been a huge part of getting somewhere with my mental and physical health.
My anxiety has reduced down to nearly zero as a result of doing all these things and I now feel more on top of my ME symptoms than I ever have. That, in turn feels much better emotionally.
It’s been a long, slow haul to drag myself out of the place I was at when I first accessed counselling but I feel I’m getting somewhere. MTZ is part of what’s helped me feel better but not the only thing.
© Lindy 2016
NB I am not a medical doctor and anyone reading this post should always consult with their clinician before taking any medication. This post represents my experience only and should be relied on as such.