The Box under My Bed: an Unashamed Plug for Post Pals

I keep a box under my bed.

It is a bright pink shoebox with a white lid.

It contains, not shoes but letters; dozens of them, from people I have never met.

When I was diagnosed with ME in my early twenties, my doctor suggested I join a support group, the Association of Young People with ME (AYME) and encouraged me to join their pen pals scheme.

I was matched with two young women of a similar age and we wrote to one another for a couple of years. I was moderately affected at the time, still able to work half-days and have a limited social life, but needing to rest at home for several hours a day in order to do so. I would often use the time I spent confined to the house writing lengthy replies to my pen pals’ letters.

We occasionally discussed our health problems, but mostly we chatted about ordinary things like hobbies and boyfriends, music and movies. We were each affected by the illness in very different ways, but there were also many similarities between our experiences and it was good to have friends who could understand the frustrations and limitations of illness that our healthy peers could not.

The sight of familiar handwriting on an envelope on the doormat would always give my heart a lift and I kept their letters in a shoebox so I’d have them close to hand whenever I needed a reminder that I wasn’t alone in my difficulties.

When a string of major relapses ultimately left me bedridden, I was too severely affected to be writing lengthy letters. Hypersensitive to light and sound, I spent two years in a dark and silent room. Unable to read or watch TV I had no knowledge of what was happening in the world outside: the UK smoking ban, Saddam Hussein’s execution, the Virginia Tech massacre, a fatal train derailment barely twenty miles along the same stretch of railway line that runs past my window, it would be months or years before I heard about any of them.

Unable to see out of my window and mostly too ill for visitors, I started to forget about everyday things that other people took for granted. I was completely unaware of the passing of the seasons. I had no recollection of crocuses, blossom, frost or conkers. I forgot about pizzas, penguins, puddles and police cars. If asked to name an animal, a country, or TV show I’d have struggled to give an answer; the simple act of survival took so much of my energy I had no resources left to hold on to such memories. Piece after piece of the outside world slipped silently away until all that was left were the four walls of my bedroom.

When AYME learned of my relapse, they assigned me the first of several subsequent ‘buddies’ who volunteered to write to me without expecting any answer. They told me about their pets, their hobbies and their families, and every precious note pushed the boundaries of my bubble just a little further outwards.

One single-sentence letter read:

This morning I baked cupcakes and now my kitten is attempting to bat the end of my pen as I write this.

For weeks I dreamed of kittens, and baking, and cupcakes, things absent from my world for so long that I had forgotten they existed.

It was through one of my ‘buddies’ that I first learned about Post Pals, an amazing charity set up by housebound teenagers who wanted other sick children to have the comfort of receiving cards and letters. The charity is run from their hospital rooms and sick-beds and relies on caring people like the readers of this blog to log onto their website and send a card, gift, letter or email to a sick child or their sibling to help to make them smile.

On days when I’m feeling lonely, thinking of cheerful things to write to the pals helps me feel cheerful too, and though I never expect to get replies to my letters, every once in a while I will. So on days when I am bedbound, or feeling worthless and self-pitying at my inability do the things I’d like to do, I reach for the box that’s under my bed and pull out dozens of reminders of just how easy it is for any one of us to make a difference to somebody, somewhere.

So if you can spare a couple of minutes this week, please head over to the Post Pals website and check it out. For the cost of a stamp and a moment of your time, you can make the world of difference to families that are going through difficult times. The website has advice about what to write about, but even something as modest as ‘best wishes’ or ‘thinking of you’ will be perfectly sufficient.

Because take it from me, what people with chronic illnesses really need to know is that someone is thinking of them; that somebody cares and that they haven’t been forgotten.

It really is that simple.

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13 Responses to The Box under My Bed: an Unashamed Plug for Post Pals

  1. drgnflie says:

    ❤ I spent ages locked in my room with severe light and sound sensitivity, I couldn't even see outside most of the time because my dad had to put blackout shades on the windows. My only connection with the outside world was my laptop, where I could adjust the brightness of the screen. The problem was my dad wouldn't let me go on any social media websites at the time (like facebook) because he was afraid of them, so I didn't really have any way to keep in touch with friends or family. I did have email and my phone, but my "friends" did not visit or write, and they sounded irritated if I sent them a txt or email as if I was wasting their time. I held it together for about 6 months when I first got sick, but when I when I was trapped in my room I started loosing it. thankfully I made a friend on the Dysautonomia Connection, and we have been in constant contact every day since.

    • I have often wished that Facebook and Twitter had been invented when I first became housebound. They didn’t come along until a few years later and by then I’d lost touch with most of my pre-illness friends. I will always be grateful for AYME for introducing me to other sufferers so I wasn’t completely isolated. I’m glad that Dysautonomia Connection did the same for you.

  2. Reblogged this on sondasmcschatter and commented:

  3. Juliette Wills says:

    Great post, as always.

  4. Reblogged this on and commented:
    Reaching out to people is what makes us human. When illness, of any type or name, traps us in increasingly smaller worlds then it is all too easy for isolation to result. Isolation is one of the greatest losses caused by Chronic Illness; we lose our identities and we lose our connections – all at the same time. Perhaps there are ones in your immediate world that you can reach out to or perhaps you can reach out to others too. As the poem says, smiles are contagious; smiles can travel the world. Share one today. For me.

  5. mcsgal says:

    I shared this on facebook. A simple act of service helps the giver as much or more than the recipient. Thanks for sharing.

    • Thank you. Post Pals are a small but very worthwhile charity and rely on word-of-mouth to find new volunteers to support their work so every Facebook share really does make a difference.

  6. Your body may never allow you to do all the things you once did, but you are fighting chronic illness with strength and passion. I still hope you can get on those bloody swings, though, the ones that keep foiling you. I know it’s not something you’ll get to pick, and that it won’t have anything to do with how hard to “try”, but will, instead be something that the universe gifts you one day without warning or reason, rather like those letters you send and sometimes receive. I hate that I’ve been an absent blogger/correspondent here lately! I’m still reading, and I still care, and I will cheerfully share on Facebook and see if my daughter will write a couple of letters!

  7. stampinsal says:

    I was an AYME’r also before I got too old for it 🙂 x

  8. Wonderful, sharing this on Facebook..

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