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School University and Work with ME


Interview: School, University and Work with ME

This is the second interview of my new blog feature – “Interviews with people living with ME/CFS.” The idea is to interview people living with ME/CFS, and gain an insight into their lives, to help raise awareness and increase understanding of this disease. 

Here is my interview with Hannah, discussing the challenges of school, University and work with ME.

Tell me a bit about yourself 

Hi, I’m Hannah, 31, a primary school teacher to small and crazy children and I live with my boyfriend Will in Letchworth. I’ve had ME since I was 15, was housebound for about 4 or 5 years at the beginning. I can’t pigeon hole my ME. Yes, I had severe ME when I was younger and I’m not as unwell as I was but my ME changes daily, sometimes hourly so I can’t say if I have mild or moderate. Some days I can be severe and not able to function at all.

 

 
I’m very lucky to have an amazing family who are incredibly supportive and I would be utterly lost without them. My boyfriend had no understanding of ME until he met me and now he cares for and protects me, even when I’m stubborn and ‘have’ to clean our flat without any pacing thoughts. I didn’t think it was possible but I’ve found someone who ‘loves me most when knackered and a wreck’.
 

I created High5ME with the hope of sending positive vibes about ME and celebrating the smallest and biggest achievements. Some weeks I am better at keeping up to date with Twitter some not so. I feel Twitter is a full time knackering job and it takes a lot of energy to read through the news feed.

When did you first become ill with ME/CFS? 

I was 14 when I started to become unwell with tonsillitis. I had my tonsils removed and never really recovered. I wasn’t able to attend school, I became house and sofa bound very quickly. My Mum and sister are my most fierce protectors. My Mum knew something wasn’t right so she kept taking me to the Doctors.

I had bad experiences during that time. Doctors saying ‘you don’t have a temperature so go to school,’ ‘you look fine to me.’ It was so disheartening but then we went to another Doctor who fought for me to be seen by a paediatrician who diagnosed me with ME. In all that took nearly a year.

They arranged for me to go to school part time but after a few months I couldn’t manage it so I had a home tutor and I took 4 GCSE’s from home. Thinking back, getting dressed, sitting up at a table and concentrating for an hour a day was incredibly difficult for myself, alongside losing all my friends and social life.

How has it affected your life? 

This illness hasn’t just affected my life, it has affected my whole family. My stepdad became my carer, my sister campaigned for more awareness at our school and my Mum had to watch me become so ill and fight for me to be diagnosed and receive the treatment I needed.

For me, it took away my teenage years and young adulthood. I really hate that. It took my life in a whole different direction, one I didn’t have control of. When I was 18 all care for me stopped as I was seen as an ‘adult’. I became very ill. I barely left the house. When I was 20 I went to a ME clinic and I saw a psychotherapist within the team to help me deal with all the anxiety, feelings and emotions around the condition. I also learnt to pace and practise Mindfulness there. I started to walk to the end of the garden, then around the houses. I got a part time job which was amazing for me. It was everything I wanted. I travelled and started university. Trust me, this was over 5 years of work. It didn’t happen overnight and it was beyond hard to do some days but I feel going to this clinic was the turning point for me.


ME also put my life on hold. I went to university a lot later in life, got a job later, moved out later and I haven’t had a family yet and ME is a big part of that reason.

As suffers know, it is there every bloody hour of every bloody day. Even at night! I feel sad when I think about how ill or exhausted I feel. It affects things like driving, cooking dinner, washing up, sitting up, communicating with friends, talking, playing with my nephew and niece, almost everything. I try to just ignore how sad I feel about it and just get on with all that stuff but it is really hard some weeks. People who aren’t in that circle of ME have no idea how affected you are and how much they take for granted.

Brainfog. I HATE brainfog and affects my life a lot. It can totally disable me and prevent me from even having a conversation or following simple instructions. It’s something I have a lot and quite severely.

What do you do for work? 

I am a teacher. I teach 5 year olds and it is the best job in the world. Being around those crazy kids is so fulfilling and I love it. It’s the other stuff that goes with teaching (I won’t go into that here because that’s another 4 pages long!) that I struggle with.

It is tough working with ME, especially in such a full on and demanding job. I get up at 6, at work for half seven and some nights I don’t stop working until 8. I try to pace my day. During lunchtime I don’t go to the staffroom, I sit and eat lunch in class. This is so I can rest, have 20 minutes of quiet to make sure I get through the afternoon. I try to have 10 minutes rest after work but it often doesn’t happen as parents need to talk, my Head Teacher needs to talk to me about a child protection issue. The list goes on.

When I manage it properly I have a rest after school and when I get home. The rest at home really helps and I try to make sure it happens daily. I also manage with the kids without them knowing. I’ve found little ways to make it easier like having a ‘Miss Savage’s helper’ who runs around after me when something is the other side of the room and I’m too tired to get up and go over myself. I also practise Mindfulness and this is amazing for keeping me and them calm. It takes a lot of energy to get annoyed with them and shout so I always try to be calm and quiet which helps my energy levels.

My Head Teacher is understanding to a point. She tries her best to understand and when I have gone to her in the past she has said I can go home early (3.15 when the kids leave) and it just eases the pressure when someone knows why you aren’t on top of your game.

My colleagues are great, I’ve only told a few people and they are great at helping me out, telling me to go home and covering when I need to go to the Drs. A LOT of days I think I should do something else, that I should go part time or leave. I can’t afford to go part time so I try to manage the best I can. My symptoms vary hugely because of working and that’s hard to live with sometimes. I feel guilty for going to work and making my ME difficult, yet very grateful and proud that I can go to work as there was a point when I thought this would never happen.

 

You mentioned you also went to University whilst living with ME. What was your degree?

My degree was education and over 3 years. The university knew and they were fab. I was able to park on campus instead of getting the park and ride bus. I reduced my hours in placement, so instead of 5 days in school I did 4 and I was able to hand my essays in later if needed.

How did you manage your studies with ME/CFS? 

When I was at university I was still at the ME clinic so I managed my time and pacing very well. I would write an essay for 20 minutes then do something else or have a rest. I paced everything in 20 minute chunks. Took longer but I didn’t crash at the end of it.

Were you given any extra support whilst at University?

I was entitled to a tutor whilst I was studying. He helped me write notes, type essays and hand course work in on time.

What were the biggest challenges of doing your degree whilst living with ME/CFS? 

My biggest challenge was pacing whilst no one else did. I had to pace so much and I used to feel jealous of others who could just write an essay in a matter of hours.

Were you able to take part in the social scene of University life? 

Because I was older I didn’t really do the partying scene whilst studying. I envied others who did.

Have you been recommended any “treatments” or things to help with your illness? 

When I was at the ME clinic I took a course in Mindfulness which helped calm my nerves and thoughts immensely. And talking to someone about it really helped. All the feelings that are attached are sometimes as painful as the physical pain we feel.

I learnt to pace everything in chunks, walking to the end of the garden and resting after, pacing writing essays, pacing knitting and even watching telly because that in itself is hugely draining for us.

I’ve tried all the herbal things, vitamins, cutting out particular food etc but nothing eased my symptoms. I’ve been on Amtripyline for about ten years and that works for me, it eases some pain.

What are your biggest frustrations? 

My biggest frustration is pacing. For me it is the hardest thing in the world. Telling yourself to pace something like folding the washing, cleaning, going out with friends. I find it hard.

I find it frustrating that ME is so underestimated, the pain, exhaustion and heart breaking emotions we feel. Some days there are no words to say how hard it is.

Another frustration is having to rely on other people to help me do simple things. When I was younger it was things like washing my hair and now it’s Wil nagging me to let him help fold up the washing or hoover. It’s little things that I so want to do for myself but some days it is just so exhausting and that is sometimes hard to accept.

Also its frustrating that I sometimes don’t have the energy to text friends or keep a text conversation going as it’s exhausting. It’s frustrating that I have to pace how long and when I see friends. But I am very lucky to have a small and close group of friends who don’t judge me and understand when I can’t text back or stay for another coffee.

What do you still manage to enjoy in life? 

I try to enjoy most things, I’m a stubborn mule and I won’t let this beat me. There are hours and days that it does but it doesn’t for long. I adore spending time with my nephew and niece, playing with them is just the best. I’ve started running and most times I enjoy it. It’s taken a year for me to run 20 mins because I paced it so heavily. I enjoy coffee with friends, listening to the birds whilst I rest and going on adventures with Wil. I enjoy teaching my kids. ME put my life on hold for so long and affects it so much I try to not let it ruin the enjoyments I can have.

 

 

What are your hopes for the future?

I hope there is a cure. That is my biggest hope because this illness is beyond hard and difficult to live with. I hope to wake up and not be exhausted everyday or be in pain.

Whilst it’s hard and difficult, I’m so ridiculously proud for managing my life with it.

Messages

There is a light at the end of the horrid dark tunnel. Not so bright for our sensitive eyes! If I could tell me 15 year old self something it would be that things turn out ok. That I will appreciate absolutely everything and never take anything for granted. That good things and experiences can happen and I’m not defined by the illness. Because we aren’t. It’s a huge part of us, something we are protective of but it doesn’t define who we are as people. Life will be ok.

Thank you so much to Hannah for this brilliant interview, and for giving such an honest insight into her life with ME. To be so severely affected by ME and housebound as a teenager, to then finding a way to study for her degree and become a teacher, is so commendable. I really do admire Hannah’s courage, determination and strength of spirit. Such an inspirational message to finish the interview with too.

Thank you also to Hannah’s partner Wil, who is a photographer, for these amazing photos. Wil has also agreed to be interviewed from the perspective of someone living with a loved one with ME, and so it will be really interesting to hear his story in the not too distant future! 



Emma England
Chronic Illness / Holistic Health Blogger

https://mobile.twitter.com/Not_Just_Tired

 
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