The challenges carers face when caring for people with ME/CFS

Pretending everything is Normal

It took seven months for John to get an ME diagnosis. I think we were lucky. It got harder and harder trying to keep things normal over that time. Being optimistic about him bouncing back from his ‘virus’ …….no they never found an actual virus. Trying to keep working. Until one day it all became too much, and I never went back to my desk.

In more recent years I have found part time work – zero hours – so that I have the flexibility to be there when he needs me.

How do you manage caring and work?

Carer Health

One night I got up to go to the bathroom and I collapsed. I was taken to hospital, checked over and discharged with stress and exhaustion.

For the first two years John’s health was so poor that I was up most of 24 hours a day. It was always going to have a detrimental effect on my own health.

It’s not easy coming out of something like that. You can’t stop feeling stressed when the cause of the stress doesn’t go away. Medication helped, of course.

I forced myself to have short times away from John. An hour or two when my husband was home from work. Coffee with a friend, sitting at the beach, occasional massages paid for by a small grant from the local authority carers support fund. I even joined a Pilates class and although I was never very good at it, it gave me a regular one hour to ‘relax’ and not think about caring.

Carer health is so important. I learned the hard way that I needed to be healthy in order to care properly for John.

Getting support

Do you know that you are legally entitled to a Carers Assessment by your Local Authority? The Care Act gives all carers a legal right to choose to be assessed as an individual, and not to be assessed as part of any needs assessment of the person living with ME/CFS.

I’ve never bothered. Many years ago, a District Nurse told me I would be wasting my time and judging by the stories I hear from those who have tried, I am inclined to agree. It’s wrong, I know.

Instead, I think very highly of my local ME Support charity and Carer Support charity. Both organisations have provided an ear, advice, and help with benefits.

The carer charity provides monthly support groups and although I was mainly with non ME/CFS carers, I found them extremely supportive.  A safe space to sit quietly for an hour, to chat if I wanted to, and to switch off from my caring role. They even found me some Moving and Handling training, so that I could learn how to force John to sit down when his legs stopped working whilst standing up.

What are your experiences? What kind of support have you managed to get from your local authority? How helpful are your local charities?

Benefits

What a minefield.

After a stressful time with DLA, John did get a high rate award for a short time, and I claimed carers allowance.

Thereafter, I claimed carers credit, which basically pays my National Insurance when I’m not working, so at least I’m still building credit towards my state pension.

Getting Away

I remember our first trip away leaving John at home alone. It was two maybe two and a half years after his ME/CFS onset, and he had been quite severely affected. Either his dad or I had been with him every day. He was anxious about being left, and we were anxious to leave him.

We booked bed and breakfast at a hotel 30 minutes away. Left home after I’d cooked John some dinner and he was ready for bed. Checked in to our hotel and went to the pictures. I didn’t sleep a wink. We had an early breakfast and were home before 10:30 the next morning. We found John in a crumpled heap on the living room floor. He hadn't managed his supper, bed, or breakfast.

It was a while before we tried it again. But now, before COVID, we are able to have odd nights away. We always book allowing for cancellation. There’s been many a time when our plans have been cancelled.

I’ve never considered respite care as an option. The upheaval in routine and unavailability of specific dietary needs is simply too much to cope with.

How do other carers manage?

Hello, my name is Martha, my son is John, and I am a carer.

Martha.