Sunday, 22 June 2025

It’s my birthday!

So this week I turned 32 (though still people think I’m in my 20’s).

Every year feels like something I’m grateful for because of my health and disabilities. It also brings some sadness that I’m still in this situation with my health and I’m not out there doing the dream things I wish I’d rather be able to do. However I’m still so hugely grateful for many things though and this is what I try to focus on around the time of my birthday.

Making pancakes!
I try to make my birthday as special as possible with lots of little acts of self-care. Like when I had my bath I used my favourite skincare products and gave myself a mini facial. I also got out my favourite Lush Snow Fairy shower gel. I put on some makeup too which always makes me feel brighter. For my tea I decided I wanted pancakes as a treat. I wanted to be in on the action so I made the mixture myself and helped my PA make them. (Unfortunately I enjoyed them too much to take a photo of them!)

I received some lovely and very thoughtful cards gifts from family, friends and my PAs. This really made my day and filled me with love and gratitude to see people knowing me so well and just the kindness that went into choosing or making things for me. Knowing I love my garden, handmade gifts, my need for low-energy activities, that I love crafts Moomins and pjs,, a voucher towards a facial or something and lots of other lovely things. It’s lovely to look at my cards too that I’ve put up and know that people have wanted to send me a card to celebrate my birthday.

As well on another day I went to my Dad’s and stepmum’s and the three of us ate tea and played a game which is something we collectively enjoy doing together. I won the game which really surprised me as normally I don’t win at games.

So yes birthdays can bring difficult emotions for me. Difficult memories and thoughts of more illness ahead of me especially at the moment as I’m living with undiagnosed symptoms that I can’t get answers for that are really affecting me and not knowing the outcome. However on the bright side my 32rd year has so many positives. 

  • I have my own home that is amazing both inside and outside; quite literally, as Dad has made my garden so lovely for me.
  • I now have a wheelchair that meets my needs and my Batec that gives me freedom and independence. 
  • I have some amazing friends and pen pals. 
  • I have an amazing family. 
  • I have a new amazing PA now so my care situation has really improved. Hopefully in my 32nd year I’ll get a full PA team - how amazing would that be! 
  • I’m also now under a specialist M.E. team at UCLH (my first appointment is in October and I was only referred in February!) Maybe I’ll also from them start to get answers or referrals to get closer to working out my undiagnosed symptoms.
  • I’m doing really well at my declutterring and organising of my home plus my no spend project I start this year. I also want to start a project pan too at some point too!

That’s quite a list of positives! There are so many reasons to be happy this year going forward despite the difficulties and everything. Focusing on the positives help get me through the difficult times. I’m not one of those people who lets my health beat me down no matter how bad things get. Yes sometimes I have a bit of a cry but don’t we all, illness or no illness. We all have things in our live that challenge us.

Birthday’s are a time of the year where we can look back on the year we’ve just had. We can see how far we’ve come, what we’ve accomplished and survived etc. and what we have to come in the year ahead both positive and challenging. Just deal with one day at a time and remember to breathe. Embrace every day as it’s a gift as we never know what is to come.

Monday, 16 June 2025

Why mail is so important to me

I’ve done pen palling for many years now. It was something I started when I became chronically ill. It became a hobby for me to do as well as reach out to other young people who a few also had chronic health problems or disabilities, others just enjoyed putting pen to paper.

I think I started out buy joining a a Facebook group called LettersOfLove run by Jenny who just wanted a group where people can write to one another without the pressure of having to become pen pals and exchange letters back and forth. I made a few pen pals through that group one I still write to now and I’m still in touch with Jenny. However the group fizzled out as only a couple of members of the group were actively mailing and not receiving much mail in return from inactive members.

I’ve had some negative pen pals in the past but when that happens I just stop writing, the same goes for people where I just don’t feel a compatibility. I’d rather have a positive group of people that I enjoy mailing to.

I’m now in a place where I have a really good group of pen pals. Some people I write to back and forth others we’ll just occasionally exchange mail.

I write all over the world: Switzerland, Germany, Canada, USA and New Zealand as well as the UK. So I do get to see some interesting stamps which I like to collect.


Why mail is so important to me

Mail is so important to me as it gives me a connection to other people. I’m unable to socialise in person and I experience a lot of loneliness and isolation. I also don’t have any friends in person which adds to those feelings. I only really see my carers/PAs and nurses and close family which definitely isn’t the same as hanging out with friends in person. My only interaction with friends is digital messaging like WhatsApp or Instagram alongside letters.

As well as wanting to connect with other people I also want to connect with other young people with chronic illnesses/disabilities. I’d love to meet up with others in real life but for now letters will do. I find it really helpful through letters to share that lived experience of illness and disability and how we live with and cope with our health problems and share ideas such as aids we find helpful or discussing pretty mobility aids and so much more. I like to talk about chronic illness and disability all in a positive way and I find that with the pen pals I have. We also have that balance where we also talk about everyday things too. Things like books, craftings, days out, pets, organising, baking etc. as our health problems aren’t the sum total of who we are. So writing about health and non-health things I find is a good healthy balance. But connecting with other chronically ill/disabled people in a positive way makes me feel like I’m not alone in what I’m dealing with with my own chronic illnesses and disabilities and also what I’m still trying to find answers for. It’s comforting in a way knowing that there’s others out there and also comforting knowing that there’s people that want to take the time to send me mail, whether it be a regular exchange of mail or us occasionally exchanging mail to one another. It’s that kindness of people that means a lot to me.

I have a fantastic group of pen pal now. Some I exchange letters with back and forth others we’ll exchange mail to each other periodically with no obligation to write back. What I also love about my pen pal group is how patient and understanding they are at how slow I am at replying to letters because of my health conditions. They also don’t mind how much or how little I write as they know that that’s all I’m able to do that moment in time to reach out to them. That also works vice versa. I give my pen pals however much time they need to write back due to health, life, work etc. and I also know that however much they’ve written is all they’re able to do that time and I totally understand and appreciate that they’re given me their all. What matters to me most is just receiving that postcode, card or letter and the thought, time and kindness that’s gone into that.

When I write a letter to someone I feel like I’m talking to the person I’m writing to and that gives me that closeness to my pen pals. There’s always something to write about. My life isn’t overly exciting but I can write about my current books and craft projects and my garden at this time of year plus maybe disability things too depending on who I’m writing to. I also love asking my pen pals lots of things too. I also get so much enjoyment out of creating unique mail. Never once have I sent two pieces of mail alike. Sometimes I’ll create a card, other times a letter or occasionally I’ll send a postcard. I love finding and sending novelty shaped postcards; the last one I sent was shaped like a rainbow. I love doing envelope art too and creating lovely cards or pockets for additional pages and stickers. I’m in awe of some of the pen pal creations I see on YouTube and Pinterest which I try to recreate as best I can at times.

It’s lovely to read about what a pen pal has been up to like what they bought on a shopping trip, or their day out at a craft expo, or what they’re currently reading, listening to or making. Other things too like about their job if they have one and how awful their team manager is and a running saga with that. Plus other things like hobbies they’re into like one of my pen pals loves visiting bothies and sometimes writes letters to me on retro computers or on a typewriter. Pen pals will tell me about their favourite holiday places to visit, or in each letter will give me a running commentary about what naughty things their dog has been up to since the last letter. There is just so much that can be written about that I love to read; it takes me into a bubble away from everything. It makes me feel like I’m with that person as I’m reading their letter which is really lovely and it lifts that loneliness I feel a lot of the time.

One day when I’m well enough to travel I’d love to go and meet some of my UK pen pals. (I think travelling internationally to meet my international pen pals would be a bit too much just yet.)

It’s lovely to see something pretty come through the letter box among boring white and brown envelopes containing medical appointments, council tax and water bill mail. Especially on a day when I’m struggling either with physical symptoms or my mental health, it really does brighten my day. It also reminds me that people are thinking of me and that I’m not alone and people do want to take the time to write to me. It’s lovely to see the postcard. Or with letters how they’ve decorated the envelope, the writing paper they’ve used or how they decorated the paper. As well it’s always kind if extras have been included like sheets of writing paper for me to use, stickers, funky post-it notes and paper clips, mini activities like a question sheet, something to colour in, a wordsearch or suduko page. With cards it’s lovely to see what card my friend has bought for me. I have one friend who always buys very ‘me’ cards. I also love seeing handmade creations too.

When I lived at my Dad’s I had a giant notice board with lots of novelty push pins to display my pen pal mail. I really missed that when I moved into my bungalow as it was too big to put up here. Then just this Christmas gone I got some fairy lights with pegs to display cards and little bits that are included inside. I love this as I love fairy lights so it’s a great way to display my mail. (Fairy lights are perfect as I love soft lighting and with my M.E. I can cope much better with lighting like fairy lights especially as I can dim these peg fairy lights.)

Another reason why mail means a lot to me is I like to have my mail to look at in my room as it reminds me of who has sent me what. My most special mail I have where I can see it from my bed most easily and my peg lights go behind my bed. I can look at everything pegged up and know who it is from. Looking at my pen pal mail reminds me of the love put into that card and how loved I am by people and the kindness of people and how grateful I am for everyone who has ever sent me something. It really brightens me up to look at it especially when I’m struggling on my bad days. This really means a lot to me as when I’m at my worst with my M.E. and not being able to get out of bed or move, or when my pain is so bad or other symptoms are keeping me bed bound it’s lovely to have something uplifting to look at that reminds me that I’m not alone and that there are lots of people in the the world that care about me and think of me and that no matter how alone I feel I’m not alone.

So that is all of why mail is so important to me. It is so much more than simply a card in the mail.


Cards2Warriors

My tea mail

I also wanted to give a shout out to Cards2Warriors

They are an amazing organisation based in the USA but support people all over the world. They’re amazing volunteers have really supported me over by sending me cards of support. This really means a lot when you’re dealing a lot with your living with conditions like severe M.E. 

I’ve also received cards from school project volunteers in the USA who participate for extra credit. This also really means a lot to me that they give up their own time to make cards and write to me.

Receiving mail from Cards2Warrriors reminds me that lots of other people are thinking of me and wanting to show me support. 

I also won their tea mail competition and received a stash of Taylor’s peppermint tea which I really enjoyed.