August 2020

Hello and welcome to August’s newsletter. Hope you have had the best month possible.

Smiles

This month we sent 6 Smiles to those affected by ME. The items included in our Smiles change all the time as we personalise them with each person’s likes and interests. Some of the items included this month were blankets, cushions, pamper products, socks, craft sets, candles, book voucher, biscuits, a mug, and a colour changing light.

Severe ME Awareness Day

8th August was Severe ME Awareness Day. Sending lots of love to those affected by Severe ME and remembering those who have sadly lost their lives

Share a story

This month we are sharing two stories to help raise awareness of Severe ME. The first from Laura who is a Severe ME sufferer and the second from Angela who is a carer or a Severe ME sufferer. Thank you Laura and Angela for bravely writing about your experiences and for allowing us to share.

Share a story Laura

In July 2009 I was struck down with an unknown virus which left me hospitalised. I never made a full recovery and within four months I was told I had M.E. When I got my official diagnosis of Myalgic Encephalomyelitis a year after that virus changed my life forever, my paediatrician told me he was 90% sure I would be better within a year. After a steady decline in my health, two and a half years after that appointment I became bed bound and reliant on others for my every need. This was Severe M.E and never did I imagine the suffering an illness often labelled as “just tired” could cause.

Many people with M.E will tell you that there are good and bad days but, in my experience, when you have Severe M.E the good days are rare to non-existent. Each and every day is a matter of survival.

At my worst I was unable to feed myself, lift a cup of water or speak above a whisper. I had to be hoisted onto a commode, washed by others in my bed and was unable to even sit up unaided. Light and noise caused spikes in my symptoms that could last for days or weeks at a time. A loud bang can make me feel physically sick and sometimes just breathing feels like climbing a mountain. I have had to have a catheter since October 2015 because my bladder wouldn’t empty and in March 2018, I had a suprapubic fitted because there was nothing my Doctors could do to fix it. There have been days when I could see the fear in my Mum’s eyes as she watched on whilst I laid in unimaginable pain, unable to do or say anything to help me, days when Paramedics have rushed to my house only to say I’d be better off at home.

For seven years I was unable to walk. To take even a step someone would have to hold all my body weight. I have recently learnt to walk again; it has taken two years of extremely hard work and a lot of setbacks. But even now, as amazing as it feels, walking causes a lot of pain and I am very unsteady. I am doing better than I have in over 7 years and I am so grateful, but I am also aware that nothing is certain with M.E. I still spend over 95% of my time in bed and I still need help with most tasks. The wrong choice or not listening to the signals my body gives me could result in a crash that could easily cause a downward spiral back into total darkness. Nothing is easy and everything comes at a price.

Since having Severe M.E I have become very aware of how much the little things can make a difference. When your days are full of pain and isolation you learn to appreciate what you can. Hearing my Mum fall in the door from work and knowing I’m not alone has become one of life’s greatest joys. A text message from a friend or a letter in the post can turn a horrendous day into a day worth living through.

But my experience is just a drop in the ocean. There are thousands of people in this country also suffering with Severe M.E and Very Severe M.E and many of them are going through hell as I write this. I have friends who are tube fed, who cannot talk at all, who have seizures or have episodes of paralysis. And then there are those who have lost their lives to M.E. They are the reason those of us who have the ability use the little energy we do have to fight for awareness. They are the ones who should never be forgotten.

Instagram @justagalwithME

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.

If you are interested in reading other ‘Share a story’ from those affected by severe ME you can do so here.

Smile of the month

We asked on social media what has made you smile this month? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.

What made you smile this month?

Updates

Smile For ME is now registered with Charities Aid Foundation as another online donation platform.

Fundraising

Thank you to Wrapsie Woo who is currently raising money for us through the sales of her Smile For ME wrist wraps. This is what Lauren had to say…

“Hi Everyone

Over the past few weeks I’ve been working on lots of different ideas and I would like to share one with you now.

Designing & making this special wrist wrap has a lot of meaning to myself and my family.

Some of you may know already, for those that don’t, I have Chronic Fatigue Syndrome/ME.

I was first diagnosed when I was 5 years old, I rebelled against it a lot & have been very private about it ever since.

This time last year I wasn’t too good, a long term crash/flare up.

That was when the charity ‘Smile For ME’ came into our lives.

My Mum secretly nominated me for one of their special ‘Smiles’.

It was such a surprise when one of their parcels arrived in the post for me. It meant a lot to know someone understood how I was feeling.

It was due to finding myself spending more & more time on my bed because of this condition, I started trying to make things out of coloured threads.

The Charity relies on the kindness of people fund raising & donating to be able to continue sending out these ‘Smiles’.

As a recipient of one of these in the past, I am really hoping that I can raise some money to say thank you too.

This ‘Smiles For Me’ wrist wrap was designed completely from my imagination, incorporating the colours of the charity & costs just £3.50

From every purchase £1.50 will be donated to the Charity & the remaining amount will literally cover materials used + postage etc.

To buy one & help a great cause is simple, please either comment below or message me.

Each of these special wrist wraps will be made personally to order.

Thank you for reading, it’s been a huge step for me to actually talk about this.

If I can raise awareness & help others, it’s all been worth it xx ”

Thank you’s

Thank you to those who ordered Smile For ME merchandise. Money raised from the sale of our wristbands, t-shirts, sweatshirts and hoodies is used to help us send Smiles to those affected by ME so we can’t thank you enough. A special thank you to Catherine and Elizabeth the duck for the pictures you shared.

www.smileforme.org.uk/supportus

A big thank you to those who have donated and raised money for us this month. Your kindness and generosity means a lot.

Thank you Shelby for choosing to support us through Facebook fundraising to celebrate your birthday, wishing you a very Happy Birthday.

Smile For ME

xx