ME in FE - Hayley Seward writes

I’m over the moon to share this space with Hayley this week. I love her insight, knowledge and honesty. Thank you for your wisdom awesome woman! 

Working in further education is by far the most rewarding and enjoyable career I have experienced, I’ve worked on market stalls, in stores, telesales and then for the police for 9 years before making the leap into lifelong learning.

Growing up non-disabled I always took my health for granted and unconsciously never really understood how things could be for those who grew up differently to how I did. Towards the end of my career with the police (working in operational police training) I became unwell and was diagnosed with the Flu, I returned to work before I was fully recovered and subsequently caught acute sinusitis only a short while later, this time I didn’t recover. The malaise, the pain and aches seemed to be a permanent feature and my energy went from being almost constant levels of (annoyingly) hyper to practically nothing, I couldn’t think properly, it was like living through a fog of just wanting to sleep and feeling physically very weak.

My GP’s were excellent, you read a lot of horror stories from people in the same situation where they struggle for years without answers but my story was very different. Three months after my symptoms started I was diagnosed with post-viral fatigue and advised on how to try to manage symptoms and increase energy levels, I was given antibiotics and other medications to try and eliminate anything else that might be lurking, I had blood tests, scans, xray and what I consider to be a very thorough investigation, at 6 months however there was no change and I was referred to Sheffield IAPT services and counselling to learn how to deal with my new life.

The acceptance of what was now my new reality was a difficult adjustment, I was used to mountain biking at least twice a week and maintaining regular fitness to trying my hardest not to fall asleep during the day. I no longer had the energy to do anything other than work and look after my daughter, my social life was a distant memory and I do feel like I went through a period of grief.

My employers at the time weren’t very understanding and it just so happened that I had graduated with my PGCE not long before falling ill, I applied for a position at Chesterfield College and they are simply, Amazing. I was really open about my condition from the date of application and they couldn’t be any more supportive, my new manager contacted Occupational health for advice and put in measures to ensure I wouldn’t become overwhelmed, she regularly met with me to ensure I was ok but otherwise just treated me like a regular member of the team. I have a new role within the college now and my new line managers are just as accommodating, we’ve been listed as a great place to work and I wholeheartedly agree with that accolade.

It’s been four years since my diagnosis and although I’m not at my pre-CFS/ME level of fitness I do have a happy compromise that I work hard to maintain.

What works for me is pacing, one of the hardest lessons I learned was the ‘boom and bust’ cycle. I would get bursts of energy and try and recapture my former life to only be hit with a crash 1-2 days later, feeling worse than I did before. I began pacing (with drs advice) taking short walks daily, even if just for 5-10 minutes and to gradually increase this over time, I also stopped sleeping during the day and began to monitor my diet much more closely. I have good days where I feel I can take over the world and then sometimes I feel like I’ve done 4 nights without sleep at a music festival. I don’t beat myself up about it and I am much happier now.

I made changes in my home life and as a result of managing my energy I also found I began to re-inforce my own boundaries and I have become much more self-respectful and dedicate my time to what is important to me, my family, my students and my passions (not so much the mountain bikes)

Here are my Top tips 

• Mental exhaustion is just as tiring as physical, if someone or something is draining your energy, listen to your body and switch that connection off.

• You are still you, you may have to let go of parts of your identity but you are still you (and you are amazing) 

• Re-invest in yourself, So you can’t mountain bike everyday life you used to? Find another activity that makes you happy.

• Follow your Dr’s advice, we all react to things differently, I find pacing really effective but others don’t.

• Celebrate the small wins, create a Ta-da! List and mark off all of your achievements, not a to-do list.

• You still have your voice, say no when you need to, ‘well meaning’ partners or family members can become smothering with their ‘help’ and if you don’t want to take part in social activities, it’s ok to say no.

• Don’t be afraid of unsympathetic managers, It’s not your fault they don’t ‘get it’ the Action for ME website has great tools for managers of staff with CFS/ME, Occupational health are amazing and ask your GP’s for support if needed, Mine wrote me a letter as proof of diagnosis when I was first experiencing issues at my previous employer.

• No job is worth your health, It’s wonderful to be passionate about your job and you should be, but saying yes to everything you are being asked if it impacts on your health is counterproductive, if you exhaust yourself and crash you could be off work which would have a negative impact on your morale and your role.

• Connect, Having friends and peers who are experiencing the same situation as I am has really helped me to understand my own experience and the wider community, all are welcome to link in with us at Me-in-Fe, join us on twitter @MEinFE1 or by email meinfegroup@gmail.com