Home from home

My health places restrictions on the lives of those around me. This isn’t self depreciation; it’s fact.

So since moving in with my now-husband, I have gone to stay with my parents for a night or longer, for what is probably ‘respite care’ but we just call it a little holiday.

It’s really lovely. It’s a change of scene for me, quality time with my parents, and a chance for Mr Tree Surgeon to have some time to himself.

Remember I am at home all the time. And when I’m at home I need peace and quiet all the time. He can’t play his guitar or his music often because I can’t manage the noise. He can’t cook certain foods because I have the sense of smell of a bloodhound. He knew what he was signing up for but I feel it’s important to care for my carer when and if I can.

He must always be on some kind of alert incase I need help, even if I’m functioning quite well. There have been times, for example, when I’m been well enough to sit in the garden by myself but then unexpectedly ‘crashed’ & been unable to get back inside.

As a husband he doesn’t necessarily need a break for his wife, although it is perfectly natural & important to have time apart. But as a carer, because whether we like it or not he is one, he does benefit from having some time off. Say he wants to have a friend over. That’s something that it very tricky to do with me in the house, because of sensory issues, my very early bedtime, & because, frankly, I am reluctant for people to see me at my most vulnerable and unwell.

None of this would be possible if there wasn’t someone else who understand & knew about my care needs; someone else I felt safe and comfortable with. But my loss of independence & my new life with M.E. started when I lived with my parents. They know my needs. They know the signs and cues of my symptoms. Staying there is a home from home.

Having this respite care is impossible for the majority of people with M.E. If they have any good support at all, which many don’t, that support might only be from one person. The stress of having your care needs ‘met’ but someone who isn’t your regular caregiver can be immense.

Of course there are so many times when I am simply too unwell to travel the 15 minute journey and be away from home. But every now and again we give it a go.

I am incredibly fortunate to have more than one Safe Person.