Share a story – Angela

Smile for ME recently asked me if I would be interested in writing a post about how it feels to care for someone with severe ME. This is in connection with Severe ME Day on Saturday 8th August.

I had to really think about whether I could talk publicly about it, because it’s so hard to articulate, but there is no better platform than this wonderful charity.

So, what is it like caring for someone with severe ME? That’s a really hard question to answer. Especially when that person is your precious child. Beth is 15.

I can easily talk about the facts; the details of daily life and how we manage Beth’s condition.

What I can’t do is explain the gut- wrenching pain of seeing your child, your baby, suffer on a daily basis. I can’t describe what it feels like to see her living this house-bound life and to be missing what should be some of the best years of her life.

She’s a teenager, she should be out shopping and meeting friends and enjoying life. She should be planning college and whatever her future will entail. Yet she rarely leaves the house and we have no idea what will happen in terms of GCSEs and future study.

This causes Beth a lot of distress and frustration.

The grief that comes with seeing Beth missing out on these rites of passage is too hard to articulate. It’s something I try not to focus on, in all honesty, as it is too painful.

Beth started to become increasingly poorly almost 3 years ago, but was only officially diagnosed with ME 18 months ago.

Using NICE clinical guidelines, she was placed in the ‘severe’ category.

This means she can only do very minimal self care, needs a wheelchair to mobilise and is unable to carry out tasks independently. She is also housebound the majority of the time and spends most of her time alone in her room.

I know all teenagers hide out in their rooms, but for Beth it’s not out of choice.

At the time of diagnosis, I had absolutely no idea what it all meant or how it would turn our lives upside down.

Initially, I actually thought it was an illness that she would grow out of or that it would work it’s way out of her system.

We had to hit the ground running.

I checked with Beth before I disclosed these details and I’ve kept a lot of things private, as understandably, she doesn’t want to share all of the difficult aspects with the world.

Her daily routine is carefully managed and she needs this to remain the same every day, or she suffers badly from a flare up of symptoms. She has symptoms such as nausea, pain, dizziness, weakness and headaches daily.

By the time she has undergone a very slow and prescriptive start to the day, Beth will come downstairs for a short period. However, getting up and about will have exhausted her and made her feel very ill and she usually lacks the energy to eat breakfast and needs lots of encouragement.

She naturally wants to retain her independence, but I regularly see her too weak to pick up the items on her plate. It’s a slow and difficult process.

By this point, it will be approaching lunchtime.

Beth goes back to bed to rest in the early afternoon, as the consequences of being downstairs and around people and stimulation of any sort always brings on a complete crash, where she needs to be alone to recover.

Yet she is certain she wants to keep coming downstairs, as she wants to see the family and her dog and to have a change of scenery. We encourage it whenever she is able.

We have often said how much we all miss Beth, even though we share a house 24/7, as she is so rarely with us. We miss her jokes and her laughter and the way she used to dance about and sing.

Her main view for much of the day is her bedroom and whatever she can see from her window.

Using the stairs has become increasingly difficult for Beth. Our OT has repeatedly suggested a stairlift, but Beth is understandably resistant to these additional aids and I don’t want to over rule her unless I have no other option.

Sometimes, it can take an hour or more for Beth to summon enough energy, even with help, to move from her seat or her bed.

Our bathroom is no longer fit for purpose and is not accessible for Beth’s needs. We are about to start the long fight to see if we can get help with adaptations.

As for the outside world, well …Beth very occasionally ventures out in her wheelchair, which she started to use two Christmases ago.

She is waiting for an assessment for an electric wheelchair, as hers is a self- propelling type which, naturally, she is not well enough to use independently.

It gives her a much needed lifeline to the outside world, but these days Beth is rarely well enough to go out in it.

As for how it feels to push your child in a chair… well, we are upbeat and don’t make a big deal of it, but it hurts my heart every single time I see her in it.

I’m not sure I will ever actually get used to it, although I appreciate any freedom it gives her.

We are still learning about this illness and finding new symptoms and different ways of responding to them.

We have tried so many supplements, treatments, aids and strategies in the hope that one day, there will be something which makes a difference.

There is no NHS help or support in our area. When the ME specialist paediatrician retired a couple of years again, his clinic was closed down.

We are very fortunate to have found an excellent lady to work with us, but we have to pay for this service and it’s not an option open to everyone.

We will never, ever give up the hope that things will improve and there will be research and treatments to help Beth and those like her.

We are determined she will live the best life she possible can and that ME won’t take that away.

However, from a Mother’s point of view, there isn’t a minute of the day when I don’t have an ache in the pit of my stomach or when she isn’t on my mind.

There’s nothing I won’t do to help her or to make her life that little bit happier, but it’s so hard to accept that, much of the time I can do nothing but be there for her.

If the tone of this post is negative, then that’s not actually a bad thing.

I didn’t want to sugar- coat it.

Every day we put on a brave face, but that won’t raise awareness or understanding.

People need to know the reality of our life and that of others like us.

Beth is hidden away and, to a large extent, people like her are forgotten.

As her Mam, it’s my job to be her voice when she isn’t able to use her own.