23 Jan How to manage your Mental Health when you suffer from Chronic Fatigue Syndrome.

This week my friend Hannah has generously agreed to share some of her story on the blog. Hannah is in her 30s is married and has two children. She runs her own social media marketing business, you can find her at http://littleshout.org 

She also suffers from ME or Chronic Fatigue Syndrome. I am sure you will find her words both helpful and hope-filled.

Chronic Fatigue Syndrome or ME as some people call it, is an odd condition that not many medical people seem to know much about.

At the moment, I’m in a good phase of health. While to some my life seems pretty restricted (I need to use a mobility scooter to walk more than a short stroll in the park, and having a few hours in bed each day is essential) I am pretty happy. When you have spend months and years mostly in bed, life up and dressed, however restricted, is amazing.

Although CFS shares lots of symptoms with depression I knew from the start I wasn’t simply depressed as the physical symptoms I had were so crippling.

I went from being someone who would walk miles each week, to feeling totally exhausted just climbing the stairs.

Being told at 23 that you have CFS, there isn’t any treatment and recovery is not guaranteed, is terrifying.

For years I went about trying to make myself better.

I tried every diet, psychological treatment, vitamin, Graded Exercise Plan you can imagine. If you can find them on a search engine, I tried them!

But alas fourteen years on I still have CFS. There has been no miracle cure for me yet.

Six years ago I recognised I was also suffering with anxiety, not just CFS, and that lots of the other symptoms I had at the start were due to the anxiety that having this life limiting condition caused me.

It has taken me years to unpick the two (the mental health battles from the CFS battles) and to figure out how best to care for myself.

Here are some important things I have learnt that have helped me on this journey, I hope they might help you too (whether you suffer from a chronic illness or not.)

1. Recognise that it is hard.

Having a condition which means you can’t go for long walks and have to spend weeks on end housebound is bad for your mental health, and there isn’t much you can do about it. Oddly I have found acknowledging this fact freeing. At the moment my health is quite good, and therefore my mental health is better than it is when I’m unable to leave the house or socialise much. When I’m too fatigued to cook for my kids, or hold a conversation, my anxiety levels are usually pretty high, when I can do these things, they aren’t…. It’s not rocket science really!

  2. Pace yourself

If my body gets overtired, my emotions and mental state swiftly spiral into a bad state which can take months to remedy. I get overwhelmed, stressed and my adrenalin levels start to soar.

Although I am well now, this is ‘the danger zone’. My physical health is the best it’s been for years, but I have to be so very careful, to take days to rest even when I don’t feel they are totally urgent. I have to remember not to over-commit, because inside this fragile and tired body is a serial ‘over committer’ who loves to help people. This is where my husband has been and is my constant source of reason, he tells me ’Hannah, just say no, someone else will help them’. He’s a good egg!

3. Filter advice.

A while back on this blog, Elli posted some amazing tips on coping with those days when you wake up feeling stressed, anxious and wired. At that time, due to my CFS symptoms I wasn’t able to do over half of them. These tips were amazing, but I had to write my own list, tell myself that I am just a bit different and lots of ‘standard’ advice doesn’t work for me. I have learnt to replace going out for a walk with opening a window, or sitting in the garden. I replace going out with friends, to texting a mate and have a text conversation or, have a bath and listen to a funny podcast.

4. Acknowledge I’m doing my best.

This has perhaps been the best thing I do to care for my mental health and prevent those days where I wake with a tight chest, a feeling of being scared and not wanting to face the day AT ALL. There have been parts of my life, which in the past 14 years have been really, really crap. When I was 26 and newly married, instead of going for a nice long walk with my hubby, or going out for a meal, I lay in bed for months and months. Reading posters which said ‘Life is what you make of it’ made me either feel guilty, like I was doing something wrong, or cross that whoever wrote that clearly didn’t know that sometimes my husband has to dry my hair for me, cos my arms are too sore.

I’m a real glass half full type of person, and I’m trying my best, but some days these four walls, are just depressing! Acknowledging I am doing my best is vital.

5. Accept help – even medication.

Medication has also really helped me. I have not suffered from severe anxiety for any length of time. During my second pregnancy, it was very severe, crippling even, but on the whole, it’s been manageable. I noticed when I started taking an SSRI, I felt a calmer. I still take them now, cos, why not?! I can’t take any other medication to take the fatigue away, so some pills which make me cry a bit less, and feel less stressed out – hell yeah!

My last and perhaps most valuable source of help to my mental health and has been a pearl of wisdom from my Mum. It sounds negative, but in fact it is the best advice to anyone whether stressed, or depressed, suffering from CFS or anxiety

‘if in doubt, lower your standards’

My Mum is  a gem, and this mantra is how I live. My kids often go out looking bedraggled, my house is sometimes a tip, my car – think bio hazard, but I use my energy in the areas which keep my happy, and keep my stress levels low.

Remembering it is okay to lower my standards, that the bar we keep trying to live up to is not really there, enables me to live the best life I can.