website – Letters From My Bed

A weekend to remember!

What a weekend I’ve had! Yesterday was my birthday, and for anyone curious to know, I did in fact turn 21 and no I won’t show you my ID for proof. She’s on holiday.

I’m absolutely exhausted but my cup is overflowing with the love and joy I felt showered in this weekend.

Having chronic illnesses and being disabled means things have to be planned a bit, prepared in advanced and then cling on tightly to the hope that my body won’t throw on the check engine light. Somehow, I pulled off celebrating my birthday across two days with all my loved ones and for once, I’m actually thanking my body for giving me this gift.

Friday night I met with the girls at one of my favourite pub/restaurants from before. The Three Daggers in Edington is a short drive from where Han and I used to live, and I love any opportunity to go back. Han, Laura, Darcy, Kalie and I all met to have some wood-fired pizza, some drinks and a lovely relaxed evening. I even pushed the boat out and had a few gin and elderflower cocktails!

The food was to die for, but the company was what really sold the night. I honestly don’t think I could ever spend too much time with my friends, but to have them all together is a real treat and something I’m incredibly grateful for. We chatted freely about anything and everything, even discussing the proposed in-patient pain clinic I’ve been referred for, and why I try so hard to mask my symptoms when they come up. I can tell these girls anything, and I’m a truly lucky lady to have such incredible support and love. Of course we spoke about plenty else, the highs and lows of raising children, work, family. Everything was on the table and it just felt so good to share the night with them all!

Saturday, my birthday, we had a family bbq planned with my parents, sister and her boyfriend, Marek. Of course I LOVE BBQ food, and I also love being Chief of Fire and Tongs (yes, that is my official title). But to manage it takes a lot of pacing, and a lot of help from Mum too.

We spent the morning, after my usual rest period to get over how yucky I feel in the mornings, slowly working through tasks to make the day ahead relaxed and manageable. I’d do a small task and rest, and repeat until the house was presentable, garden set up, food as prepped as we could get it, and drinks cooling in the fridge.

I’d don’t really do portions when it comes to BBQ food because I want it all, so we had burgers, kebabs, corn, sausages, salad, coleslaw, potato salad. The whole works.

My family arrived and I had some more lovely gifts added to wonderful gifts the girls got me. We got drinks and went and relaxed in the garden for a while, just chatting until I was rested enough to kick the bbq into top gear. Food was cooked, eaten and we settled in to let our food go down with some cards against humanity. For which I probably owe the neighbours an apology, their kids probably had an intense education.

But before we settled down, as I went to go upstairs, I realised there were some visitors at the door. It’s been two weeks since the doorbell told me the batteries were dying and I still haven’t remembered to change them!

Han, Jordon, Ivor and Arlie were on the doorstep with a cake, candles, flowers. They sang me happy birthday, I blew out the candles (that the wind already blew out) and got the best cuddles from Ivor and Arlie! Honestly this was just the icing on the cake for my weekend, and the cake itself was magnificent! It felt like my own little Love Actually scene – “it’s Carol singers!” That they’d take the time to come by with a little song and lots of cuddles just reminded how incredibly lucky I am to have the people I do in my life, and how truly loved I am. Even more so when Ivor sneaks up for a cuddle!

Riley kept popping his head round the door to show everyone his ball, proud little man that he is, and thankfully had been on his best behaviour all day. He decided that he wouldn’t use them as bowling pins to my relief, and saved that for my dad and Marek.

I ended the day with a video call with my brother, his fiancé, Ben and Pat, and my niece and nephew, Fifi and Oscar. That rounded the day off and I couldn’t have asked for a more perfect weekend to see and speak to everyone I love so dearly.

Not to mention all the messages that I’ll have to find the energy to respond to today. So many reached out, shared memes, photos and lovely messages.

This weekend really was a big ol’ middle finger to chronic illness. To have had so much love and fun in two days is unheard of for me, and I really mean it when I say my cup is overflowing with all that love and will keep me going for a long time.

I’m a lucky lady to have so many people who care about me, support me and who helped make this weekend achievable for me. I was pushing my luck trying to do everything on consecutive days, but it paid off.

Riley was on his best behaviour all weekend, no mishaps with the bbq or knocking people over with his enthusiastic welcomes. Just a happy boy , surrounded by people willing to throw his ball and a burger of his own to join in with celebrations.

I hope you enjoyed reading this as much as I did writing it. Sometimes the stars align and let me do bigger things like this weekend. It doesn’t always work that way, and I couldn’t have done it without everyone’s support and help, but we did do it and I’m a very happy, grateful, tired lady!

Ps. This weekend ticked off more things from my “Things I want to do in 2026” list. A list generated around no longer waiting to be well to live life. We’re halfway and I’ve made cracking progress!!

When the supporter becomes the supported.

There is a wonderful gift that has come from my being ill. In fact, there’s many, but one in particular that I’m exceptionally grateful for. This is the gift of meaningful communication, deeper relationships and being truly heard.

Perhaps that might sound normal to some, but it might surprise you to know that for me it is not.

Prior to the vaccines, while on the whole I had wonderful relationships with friends and family, I didn’t allow people in. I didn’t let them see the dark and the heavy, I never told anyone how I truly felt or if I didn’t like something, or that they’d upset me. I guess I was conditioned in a ‘chin up’ and ‘people-pleaser’ kind of way. That a problem shared is a terrible thing indeed because then I would feel like a burden or that I’m putting someone else out. And asking for help was certainly out of the question.

But of course I started therapy in 2020 and slowly we worked on breaking this conditioning down. How on earth could I get through the highs and lows in life if I didn’t allow others to support and love me, or at least truly see me. I’m still working on this, it still feels very uncomfortable to be honest.

The hardest thing to be honest about is how I’m doing when someone asks are ‘you ok?’ I hate answering this because I’m tired of not being able to say ‘actually I am ok’ and mean it. But of course I regularly say that I am ok, even when I’m not, because I’d hate to burden another. Or the reality that it’s the same issues I’d be bringing up. Not a lot has changed, I’m in a lot of pain, most food is dangerous, I don’t know the last time I felt even the smallest spark of energy and I’m grieving for Bella all the time.

But my sister called me today, and today I am decidedly not ok. I’m very low, my garmin watch is certain I woke with 76% body battery but somehow I’ve already used 20% doing nothing while waiting for my medication to kick in. But I’m still not sure where the energy is being stored or how to access it, because I’m bone tired and my head is full of a lot of pressure.

So when she asked how I was I decided to be honest. I have a list of things I’ve been needing to do for a while, especially changing my bedding. However, today I’m really struggling with grief for Bella, though she happens to be led right next to me. So I want to try and walk her today. But I also really need to wash my bedding, wash my hair, hoover my room, tidy my wardrobe so my clothes fit in rather than them sitting on the floor that’s covered with dog fur because I haven’t hoovered in over 3 bloody weeks. I also STILL need to send my food diary and information to the dietitian to start working on a low histamine diet with her so food can become less toxic to my body and health. It’s been nearly 3 weeks and I just haven’t had the energy to be able to write it up and send it across.

Of course there are other things worrying me besides my health and my own woes. A few family health scares have come up and that’s quite concerning while we wait on tests to decide if they are scares to be scared of or not.

But since being ill and working on therapy to break my conditioning my relationships with friends and family are much deeper, because I allow them in. It’s hard, and sometimes I still lie and say I’m ok, but I really do try to be more open and honest and in return they are much more meaningful relationships.

Today, Tash (my sister) allowed me the space to talk and be monotone and cry and little. Then she decided today, whilst deep in my grief, I would rest for another hour and then take Bella for a walk, before coming home and having a small lunch before resting again. She’d help me in the week to tackle my bedding and room and she’s going through what I’ve got for the dietitian to ensure I’ve covered everything well enough before sending. Along with reminding me of my usual advice, I can’t waste energy worrying about things out of my control because it doesn’t change them. She listened, she heard me and she helped put a little order to the jumble of tasks and emotions I’m dealing with.

Today that was exactly what I needed, and had I not allowed myself to be honest with her then I wouldn’t have got it. She can’t help if I don’t allow her to, no one can.

That’s the ‘gift’ that I’ve gained through this situation. As I said, I’m still working on being honest with people to allow them to support and love me. It also encourages them to do the same in return because I’m one of those people where I want the good, the bad and the ugly. I don’t want people to filter themselves around me or feel that they can’t come to me for love and support. It’s funny how I struggle to give them that in return, but surely practice makes perfect? Or perhaps with practice this will eventually become easier and more natural.

That’s enough from me today though, I’ve got a field that’s calling mine and Bellas name!

This girl is on fire.

On Tuesday I had a doctor’s appointment – the same doctor as my last appointment following all my blood tests. She’s agreed for now to let me work with the dietitian to bring my cholesterol down, she’s agreed the signs of liver stress are likely medication related, she’s absolutely did not advise me to take magnesium threonate to help with my insomnia, and she’s referred me for the CT mylography that I was supposed to have previously, but as we know I was sent for the wrong one. She ordered this scan, no questions asked, despite the previous doc refusing and advising I ‘get on with it’ – meaning my crumbling health. All in I’d say this was a huge fucking success. All that in one appointment! Plus more but it was little things. What a dream of an appointment!

Wednesday I had my first session with the functional medicine coach. It was largely a lot of talking, more of a discovery session. He’s certain that I can get my body behaving better to allow me to live far beyond what I can do now. I was honest in my hesitation to trust that, so we’ll see. It’ll be a long road either way. But this weeks challenge is grounding – to stand barefoot in the rain, once. My favourite soul cleansing activity. And I have the adult equivalent of a star chart!!

Today I met with the dietitian the doctor (as above) referred me to over the reactions to food and medication. I’m to eat as much ‘normal’ food as possible and log it so she can have more data and information on reactions I’m having. So less of the safe chicken salads I’m having – which I’ve finally started to enjoy rather than endure. So mild bummer, but it sounds like I’ve just been prescribed roast dinners and lots of yummy stuff. Which sounds amazing, but does make me anxious of the reactions, but I do understand she needs more data to try and figure them out. She’s also going to talk to a colleague who is a long covid dietitian in the private sector. Many vaccine injured have similar conditions to those with long covid, and that’s includes the likes of Mast Cell Activation Syndrome (MCAS) which she is querying, especially if she can’t find an obvious intolerance in the food diary. So whilst no help yet, she’s got an open mind and is willing to go the extra mile to ensure she helps me as best as she can, even if that comes down to admitting her colleague is better placed to help me.

I’m fucking exhausted. Every day there has been an appointment, with yesterday being the dentist. So this has meant washing and dressing daily, driving daily, constantly interrupted rest and a very unsettled Bella who has made the rest even less restful.

Those little moans aside, it’s been a week of success for me. The help isn’t immediate, but I suddenly seem to have found a doctor and a dietitian who are willing to do what’s necessary to help me get answers and some stability with my health. Along with the functional medicine coach, David, who hopes to help me in a more holistic way. Maybe come Christmas I’ll be shovelling turkey and gravy in me by the ladle without worrying how my body will react. A girl can dream, and this lady is missing her gravy. Especially as we’re heading into stew season!

Letters From My Bed.

It’s happened. My website is now at home on its new domain (lettersfrommybed.co.uk) and with proper hosting.

I hope this reaches everyone that reads, in looking back I realised just haow spread out across the world you all are. I’m truly humbled to have even one reader, so thank you.

Of course my next step is to get my fundraiser live and that’s my task for tomorrow, once I’ve had my first round of bloods taken. And perhaps I’ll even be able to figure out how to add a donation button to my site. But if I can’t figure it out, I’ll post the link on a post.

I know things have been pretty dark of late, my health has truly been in control. It still is. But I realised just how much more proactive I’ve been with the fear within me. I’ve had more regular therapy, I’ve reached out to many for help – especially James, Lorraine and Sandra, from UKCVFamily, who have been guiding me with my health, my website and my fundraiser. I’ve researched and set out exactly what I need to fundraise for – namely the right people who I believe can help me get a handle on what’s wrong and how to manage it. Of course there is no guarantee, but there is hope. Right now hope is enough.

My next post will be an introduction to who I am. I know many of the people who visit my blog are old timers, but I’m aware of the new reach I’ve had as a result of the charity and their support. So I’ll try to do a brief intro, and then normal posting will resume along with updates on my fundraising efforts.

Chronic illness, especially with my current state, is a truly isolating situation. You feel entirely alone, made worse by being stuck in bed for days and weeks at a time. But days like today, where I feel quite terrible, but I have mental clarity and feel lighter, they give you the breathing space you need to realise that this day and its outcomes wouldn’t have happened on my own. It’s through accepting help that’s offered, and even at times asking for it. I suck at the last one, but the generosity of those within my circle and the charity have brought me here. I now know my next steps, I just need to fundraiser to reach them.

After more than 3 years of feeling lost, I cannot begin to tell you just how wonderful it feels to say I know my next step and have hope in it.

So from little old me, from atop my bed, thank you x

A week of thoughts.

Since I am not recovering like I normally would, and struggling with accepting that mentally, I decided that I would reset my room on Wednesday.

I stripped my bedsheets to wash over 2 weeks ago and I hadn’t managed to get them back on yet. So I stripped what bedding was left and got those in the wash and dried before lunch.

This left me with remaking my bed, which is something I find incredibly hard, despite the new bed. I rested a lot but it still took everything I had and more.

Mum came home from work and found me crying whilst fighting to get my duvet cover on. She took over, put my duvet cover on absolutely perfectly (IYKYK), hoovered the rest of my room, put everything back where it belonged and left me to pick which candle I was going to light. The most important step in signing off the task as complete.

I knew it was somewhat foolish to take on this task, but the reality that I’ve been sleeping on an unmade bed for nearly 3 weeks, especially when nearly every day of that has been me stuck in bed, is ridiculous. Only it’s not ridiculous, it’s my reality.

I’ve also been putting off seeing a GP about my HR and food reactions, but I just haven’t got the fight in me right now. But then Charlet came to the rescue. She announced in the admin chat that a company called Lola has a sale on their blood tests. Without blinking Mum transferred the money and make me book their advanced 360 test. A nurse will be out on Thursday to do the blood draw and I should have the results in a few days. The tests cover EVERYTHING, 55 markers get tested.

I’m excited to be able to do this and so grateful Mum insisted as it could give me some answers to act on. Of course it comes at a premium, even on sale it’s cost £108 and would have been well out of my budget. So I’m exceptionally lucky to be able to get some answers and fast, but I know this isn’t something I can afford again.

I also purchased a chopping tool due to my difficulties using sharp tools often. I’ve had nothing but chicken salads for the last week to avoid reactions and it’s worked, but I haven’t been able to prepare this myself. So I got a chopper with all sorts of tools that can do any chopping I could possibly imagine and with zero risk to my fingers. I’ll let you know if it helps!

I’ve just been adding thoughts here throughout the week, I’ve needed to because I’m not in a good place. I’m very much in a ‘I just can’t do this anymore’ mindset. But I will, of course I will, but when you’re in it, it doesn’t feel like you can. I’ve tried to do little bits to kind of cheer me up and break the monotony, like doing a puzzle. But I paid a heavy price. In 2022 I did a quite a few puzzles, a sort of semi-active rest, and they were hard to do but if I just did an hour at a time a few days a week it was manageable. I can’t do that now, but I also can’t keep still in bed anymore. I’m sick of it, sick of reading, sick of pressure sores, sick of the same 4 walls and the boredom. But mostly I’m sick of the pain that’s keeping me there.

I hope this coming week is the start of more positivity and possibilities, especially with both rounds of blood tests. I’ve arranged to see friends on Tuesday and Friday, even if I only last an hour, because I need to break free and also nourish these relationships. My new website will go live on Wednesday, which is something I am excited for. So there’s lots on this week, and I’ll probably pay, but I’m sure I’ll feel better mentally for it.

Finding the balance between protecting my physical health and my mental health is incredibly difficult. It’s not easy making the choice to listen to my body (especially for 3 months!), knowing it will be detrimental to my mental health. Or doing something for my mental health and being punished by my physical health. The chronic illness journey is hard to navigate at the best of times and I’m still learning. Today is better, awful, but better. And that’s gives me hope.

We’re going through changes.

I’ve made a decision – based on the fact it’s a lot easier to add a donation button to my website if I have a proper hosted website.

You’ll probably be reading this and notice the name has changed. My blog is now called Letters From My Bed, which is entirely accurate. The reason being that HC&Me only tells half my story. I do have Hemicrania Continua, but I also have a boat load of other ailments, that I often write about, along with bits of advice and lessons I’ve learned. So HC&Me was starting to feel a bit restrictive and inaccurate.

The name change applies to both my blog and my linked Facebook page as of today.

I have also signed up to a hosting service, registered a domain and scheduled my blog to be migrated. So as of next Wednesday (28th)afternoon the link to my blog will be www.lettersfrommybed.co.uk.

For now my blog should visually be the same, but I might make some changes at a later date to make it more user friendly and perhaps have a little more of an introduction on an ‘About me’ page. But as I say, for now it should be the same.

The change in name and set up feels right and the timing feels right. I hope you’ll all continue to read my woes and snippets of advice…from my bed, but I’m grateful to have had any readers and supporters in the first place. So thank you, you really have helped me on this journey and it’s readers that have encouraged me to seek the help I need, this is just the first step in that process.

Love Chlo x