finances – Page 4 – Letters From My Bed

Maintaining hope.

I had the greatest appointment with the doc this morning. She’s chasing the CT myelogram for me as some dumbass at the other end has changed it to a full spine MRI, despite the referral stating why that wasn’t an option. She also discussed the idea of maybe having a lumbar puncture depending on results and that demyelination would account for many issues, including the legs not working and being disabled and the level of that limited mobility fluctuating. But we’ll see what comes back and go from there.

She’s super excited by the results I’m seeing from the diet and agrees with MCAS as a likely diagnosis, though also admitted the NHS and GPs know very little as it’s usually seen in the long covid clinics which they have no involvement with, and getting the diagnosis is even harder. She’s going to go away and do her own research so she’s in the know and understands the diet. But she’s prescribed fexofenadine, despite no diagnosis, so hopefully reactions will be more under control going forward. She also thinks a powered chair is a great idea so I can make use of the energy increase I have.

All in all 10/10 I got everything I needed and she’s keen to keep supporting me going forward.

I guess here’s a good point to actually tell you the impact this low histamine diet is having, aside from leaving me with intense cravings for my favourite foods which aren’t allowed. Mostly gravy.

Before this diet, most days I’d be lucky if I woke with 36% body battery. I used my Garmin Fenix data to help me with pacing and this is one of the key measures for that. With just 36% I’m incredibly limited, especially when around 20% would go to caring for Bella. And the trick is that you never want to run out of battery, in fact going below 10-15% can still induce a crash. So you see why I’m so limited in what I can do.

However, since the diet I’ve been seeing good numbers. By good, I actually mean unbelievable. 3 days ago I woke with 91%. Ninety-fucking-one! On average though I will wake up with 70%. Again, 20% ish goes to caring for Bella, leaving me with 35% to use so I don’t dip below 15.

I’ve been washing up, I walked Bella Thursday and today I walked Bella AND Ira (Tash’s wee dog). I hope no one saw the disaster that was me walking to the field and back with two eager dogs, on leads in the same hand, while the other had the walking stick! Given they were both walking in different bloody directions. But we had a blast and we’ve all been quietly snoozing since!

I’ve been inundated with safeguarding work the last few weeks, which has caused a crash but I’m building the stores back up. But on top of that, in the last few weeks (have been in the diet 2 weeks and 3 days) I’ve washed up a few times, cooked a few times (some disastrous), started getting on top of my laundry, hoovered, prepared lunch for the fam and Tash’s partner.

My HC pain has also been reduced which is a miracle, though new routines mean I keep forgetting morning meds which does cause a significant amount of pain throughout the day. This also confirms that clearly I’ve been having some level of reaction since the first vaccine and until the symptoms became severe it just couldn’t have been spotted.

I’m still disabled, I doubt a diet is going to do a lot is there is nerve damage, but we’re working on that as I said.

But I’ve been so full of hope with the increase in energy, I’ve even dared to dream of a future. Exploring how I might train as a dog behaviourist and what that life might look like for me.

The hardest part of the last few weeks is that Bella is already declining on the lunchtime meds and I’ve had to increase them. I know time is nearly up, and a significant amount of energy has been lost to the stress and grief of this and trying to process and plan as much as I can. I’ve been in the vets repeatedly and a wonderful receptionist gave me a quality of life questionnaire to make the decision a little easier. The trouble with dementia is that she cannot tell me when it’s time and making a non-biased decision is much harder than I imagined. So the 35% spare energy has mostly been going on Bella, especially while the meds are making her my cuddly little girl a bit more.

I’ll be honest, I’ve also already been looking at other dogs like Bella who could become my new companion through this – both my illness and my grief. The guilt of this is intense, but the closer we get the more I realise I just can’t do this alone, nor do I want to. Having Bella’s company and being responsible for all her needs is a big drive for me, she’s always getting me out of bed and moving and no matter what I go to bed with a sense of accomplishment because I was able to meet her every demand. I suppose I’ll be able to make a firm decision after the time when I know how I really feel. But I always try to be honest here, and this is one of the things that’s consuming my mind.

Of course, the dog I think would be a perfect fit is a 1 year old girl whose story is much like Bella’s was. So another part of that decision is that I would really need to consider leasing a powered chair so she could have the walks she deserved and honestly I think being able to be out more and without an impact on my body or health would do me the world of good. It seems like a sound way to spend the extra energy, I just need to figure out if I can afford the £43 a week it would cost me out of my PIP allowance, because I certainly couldn’t afford the £2300 it would cost to buy a refurbished one!

In this time I also got to see Han and Ivor, and her beautifully growing baby bump and even briefly her husband Jordon. Then I got to go for lunch with Kat, who was the wonderful woman who gave me her husband’s old perching stool (which is still a godsend!).

Maintaining connections is still incredibly important for me, especially when the friends are have are far more than that for me. It’s been hard trying to fit it in with the safeguarding, Bella and diet hiccups, but I’m slowly working it out so I can hopefully maintain at least one social day a week so I get to be with the people who have carried me this far.

So there we have it, a big old dump of the last few weeks. A mix of good and sad, but there is hope and I’m sure you can understand I need all the hope I can get right now to keep my head above water.

Have a pew.

As part of my fundraiser I requested help to invest in a perching stool in the hopes it could help make kitchen tasks more manageable.

A lady I used to work with, Kat, kindly offered me a stool her husband had stored in the depths of one of their cupboards, she even dropped it off a little while back. I was and am incredibly grateful for this, not just the stool. She spent a little time here with her two children while Bella showed them how loud she could bark.

I finally got round to setting the stool up last week, or perhaps the week before – it all blurs into one. Today I got to use it for the first time!

I’ve had quite a low day, as my earlier post states. I did get Bella out for a walk, and to make it a little special I drove us to the woods we used to walk every morning on the way to work. There’s a part that’s always quiet, where the entire floor is moss and spongy. It’s our favourite bit, Bella loves to dig it up (please don’t hate me!) and I just love the quiet and seeing her happy. But it turns out even forests change over 3.5 years and I got lost. The paths we once walked were blocked with fallen trees and in trying to find the way we somehow got a little turned around. My sense of direction is not what it once was.

Neither of us can sensibly walk very far, my legs don’t receive communication very well after a while and get very heavy, along with a constant yawn to tell me by body needs more oxygen. Bellas back legs have started going a similar way, she slips and stumbles more now, especially up the stairs. But as I say, we got lost and were walking (stumbling) for around an hour to get back to the car.

By the time I managed to drive us home we were both beyond pooped (mum had to undo my boots for me as I couldn’t get to them), so off to bed we went for a little lie down together. She actually joins me more for this since increasing her meds and I couldn’t be happier about it! But along came dinner time, and it was just a simple salad and I really wanted to do it. The trouble was, I could barely stand to be on my legs, they were not keen on supporting me after what I put them through – who can blame them!

An opportunity arose to finally take the stool for a spin. What an absolute delight it was! Once I got everything out of the fridge and ensured I had all required tools and bowls (I do this anyway because I’m anal like that) I sat down and next thing I know dinner is finished. I make it sound like a doddle but the exhaustion made chopping safely more laborious because I just didn’t have the required ‘oomph’ and exhaustion increases tremors. What is impressive though is that by using the stool this task WAS manageable and only using 3% body battery.

I could have used it before today but I’ll admit that I’ve put it off, despite taking the plunge to get one in the first place because I DO need aids to help me. I don’t think I’ll be so reluctant going forward, who knows maybe one day soon I’ll even make risotto again because I’ll be able to stir for the required 45 fucking minutes. I mean I’m clearly so blown away by how much this stool helped that I’ve written a whole journal about it, aren’t you lucky!

Is this edible?

So it’s been a minute since I’ve posted properly, I’ve just not had the energy to put together an update. Instead I wrote a guest post for the UKCVFamily blog for the start of Vaccine Injury Awareness Month.

https://www.ukcvfamily.org/post/what-does-awareness-mean-to-you

There’s the link so you can read. Of course I wrote my little not-poem-poem which I did share here and internally with the members of the support group.

Right, enough procrastinating, here comes the update.

As I’ve discussed, I was having a real issue with food reactions. I still am, should I dare to eat anything that’s remotely exciting, comforting or delicious. Of course the chicken salads I’ve been having are delicious, but I love warming, hug on a plate, foods like roasts and stews and pasta. I especially love anything with a thick gravy.

I had a whole host of tests done at the docs which have ruled out standard food allergies and IgE reactions. So I was sent to a dietitian, who I met last week. A lovely lady, who went through everything in detail – even down to medication reactions, what happened 3 years ago that started this off etc. She was honest and offered no judgement, just compassion. As you know, I had to go away and eat ‘normally’ to have more data in foods and reactions, while she spoke to a colleague about what’s been happening.

The colleague has agreed, given all the reaction symptoms, random triggers and other non-food related reactions that I am likely dealing with MCAS (mast cell activation syndrome). MCAS is essentially where your mast cells react disproportionately to normal things and release histamine throughout different areas of the body – creating the reactions. Triggers can be food, certain activities, air pressure, weather, mould, scents etc. (That’s a very dumbed down summary of the condition!)

She gave me her colleagues details and prices, along with another well respected expert in this field, but also offered to do what she could to help me. I’ve chosen to work with her, for her honesty and compassion, along with her willingness to go above and beyond what she needed to do. It also means she gets to broaden her knowledge on MCAS, which also means there’s a dietitian in the NHS that can comfortably help others like me, because too many injured can only get help privately which is a disgrace.

So I’ve got to do a little more ‘normal’ eating over the weekend, then I can arrange my next appointment with her. And we’ve both given each other some resources on MCAS to read too. The kicker is the first step in figuring this all out is for me to be put on a low histamine diet, an elimination diet. This sort of diet is restricting, and will not be easy, but it gives us a chance to identify my triggers so know what isn’t ‘safe’ for me to eat. Though MCAS is complex as a food you might be fine with today, you can react to tomorrow. A minefield I know!

I’ll also be booking in with the doc I saw again and requesting a H1 antihistamine and discuss using sodium cromoglicate, which is a mast cell stabiliser and is also used for food allergies to reduce reactions. I’m already on a H2 antihistamine, famotidine, so these are the other two things I can consider, along with some supplements. But I’ll work with the dietitian and only add things one at a time to be able to identify any reactions and to know exactly what’s working or not.

This could explain a fair amount, including reacting to medication I’d been on for 6 years following the vaccine. I just didn’t connect the dots, it wasn’t my focus. I was booking in to see a doc about psoriasis type issues on my scalp, but changing my shampoo has eliminated it almost completely in 2 washes. So I was likely reacting to something in the shampoo/conditioner I was using. Lots of things I just hadn’t thought about or considered might be part of a bigger issue.

So that’s where I’m at. It’s been a bit of a blow, but it could also means seeing some real improvements which I have everything crossed for. For now though I’m going to spend the weekend eating more ‘normal’ foods to collect the last of the food diary to be able to start with the dietitian. It feels a little like planning a last supper – I’m trying to decide on my favourite meals that I’ll likely not be able to eat again for a long time, if ever, should I react to them.

Vaccine Injury Awareness Month

It’s not just my story that matters.

I’d like to show you all something a little different today. A little while ago, and I neglected to tell you all this, I met with a photographic journalist, David Cross. He is an incredibly calm, compassionate and empathetic man who made telling my story very easy. David is the founder of the Centre for British Documentary Photography and his work, and the work of other photographers is meaningful and inspiring.

David attended the preliminary hearing of Module 4 of the Covid-19 Inquiry in May and this module is focused on vaccines and therapeutics, of which UKCVFamily are core participants, meaning the members, like me, are also represented.

At this hearing David met several Trustees and members of UKCVFamily and from there he chose to work with us to tell our stories. David visited myself and several other members to listen to our stories and take some powerful photographs. He asked the right questions and he’d discuss lighter topics between the heavy ones so they weren’t all consuming. He truly listened to understand. Quite frankly, he’s wonderful and I’m grateful to have met him.

Mr Postman has just been by and delivered my copy of the Humanity magazine fresh from the press. I have read it cover to cover and let myself get absorbed by the words, the stories told and the photographs alongside them. Not just David’s work but the work of other photographers and their subjects.

I am going to share a copy of ‘my’ page here. I don’t fear my story, I know my story holds power and it matters. That’s why I do this, why I share with you all my darkest moments and highest highs. But I would strongly encourage anyone to order a copy of Humanity (rb.gy/9sl6m) and read the stories of others like me, and unlike me. Regardless, they are all my ‘family’ now, and their stories hold just as much power and matter just as much and probably more than my own. But they are not mine to share, so please do hit the link above and read them for yourself.

It was an honour to have someone want to share our stories and all credit goes to David who truly worked with each of us and our individual needs both in preparation for and during our interviews.

Updates and results.

So I’ll start off with the great news, my pillow arrived and I slept wonderfully last night. I woke up with significantly reduced neck pain – so thank you to everyone who’s donated to help me.

The fundraiser has been a rollercoaster, especially emotionally. I just didn’t think it would take off like it had, and I was honestly just excited to raise enough to see the private doctor. To have raised £1275 is just phenomenal, and I’ve cried a heck of a lot. I’m putting it to one side so I have it there should I need any tests or treatments following the appointment, or if Bella needs anything urgent too.

I saw a doctor on Tuesday to discuss my recent change in health. I’m in for more bloods today to check for coeliac disease and IgE levels. She’s also referring me to a dietitian as chicken salad isn’t sustainable, though it’s hardly my fault my body rejects everything else. We did a simple yaki soba last night, hoping that fresh veg etc would be ok. Wrong!

Naturally during this appointment I explained that I just ‘can’t cope living like this and being afraid to eat’. So I was hit with the ‘we do need to consider these reactions being a physical manifestation of your mental health, you could be having panic attacks.’ So I’ve tasked the doctor with finding at least one person in Britain who has panic attacks at the idea of roast dinners and Chinese takeaways. I don’t hold out a lot of hope for her, but I’ll remain open minded. I did kindly point out that the symptoms started before my mental health dipped, not the other way around.

My private bloods came back last night and while they’re mostly ok, there are some concerns. Most of the lipid results, regarding cholesterol, are high and do need addressing. This obviously isn’t good news for my heart health. Of course the doctor that reviewed these doesn’t know my situation, so he’s recommended a healthy lifestyle and diet, including strength training. Which we all know I’d have never willingly given up. My testosterone is also low which is significant for women and impacts mood, energy etc. Again I’ve been prescribed strength training. And my liver is showing signs of stress.

I’ve sent these results to my doctors surgery to review alongside last weeks bloods and the ones being done today. I will of course keep you posted on this.

I’m booked to see Dr Claire Taylor on December 30th, but I will be checking daily for a cancellation that could get me in sooner. I still believe she is the best chance I have at getting real answers and real help. The doctor on Tuesday willingly admitted that western medicine and the NHS have quite a narrow and close minded viewpoint and they can only do what they’re allowed to do. It was refreshing to hear!

So there we are, you’re all up to date and this information is now no longer taking up storage space in my brain. I ensured I had a completely clear week, last week I did too much and I knew I needed to try and take things slower. So on Monday Tash dropped by and we took both dogs to walk around the block. Quite often I struggle with this, and Monday was no different. But I decided to do the last stretch along with edge of the fields so Bella could have a bit of a run. If you could have seen just how happy she was to be out with her mum you’d have cried with me. With her big smile, she didn’t run, she bounded and frolicked. It will unfortunately be her last off lead run outside of enclosed fields, but she had a wonderful time and so did I.

You’re amazing.

When I put up my fundraiser, I’ll be honest and say I didn’t expect to raise more than £100 or so. Not because I doubted peoples generosity, but because I’ve always had difficulty seeing just how much people care about me and the cost of living is real. But I decided I had to try, because desperate people do desperate things.

Within 30 minutes you wonderful people crossed the £100 mark and I was balling my eyes out. What I really didn’t expect was that within 4 hours of it going live I would hit the baseline I’d set for my essential needs. £500 in 4 hours!! And I cried throughout all 4 of them. So you can imagine just how emotional it’s been as this total has DOUBLED!

I don’t even know how to begin to thank every donor, every person who shared the link, everyone that sent kind messages of support, offered to walk Bella or had stuff they no longer needed on my list.

For once I genuinely don’t know how to use words to convey just how grateful I am to each and every one of you. But thank you. Thank you, thank you, THANK YOU.

Thanks to all of you in just two weeks I’ll be able to withdraw the funds and get myself booked with Dr Claire Taylor at her next available cancellation, purchase the pillow my poor neck desperately needs and see if the Visible wearable really can help me listen to my body a bit better. I’m already arranging with a friend to acquire a perching stool she no longer needs. The extra raised will be put aside to cover further tests/appointments and help me with Bella’s mounting bills.

None of this would be possible if I hadn’t asked for help, and I’m just flabbergasted by how much help I did get. Both before and after, from friends and family. Especially to Sandra, James and Hannah for helping me with the writing and my new website.

So thank you again, and I’ll probably keep saying it x

Why and what I’m fundraising for.

I’m both shocked and ashamed to be here writing this, to actually be asking for help. I’m even more ashamed to be asking for financial help, but I am desperate. I’m asking for £500 to be able to pay for a private consult along with certain items that can help me manage my chronic conditions.

How did I get here?

In June 2021 I became extremely unwell, in fact normal life stopped for me then. Since 2015 I’ve had a rare condition, Hemicrania Continua, that was fully managed, but when I had the Pfizer vaccine in June 2021 it rapidly became far, far worse and intractable. This condition causes constant pain on one side of the head and my minimum pain level is 8/10, often higher. Since the adverse reaction, I’ve had 8 treatments and 2 neurosurgeries, the last being a nerve stimulator implanted in my head in October 2023. This drastic treatment was my final hope. But it has been unsuccessful in reducing the pain.

On top of all this I had various other symptoms but they took a little while before they became debilitating, unlike my HC. Within 6 months I went from a facade engineer/ draughtswoman and internationally competitive powerlifter to disabled. I now have to use a walking stick if walking further than 100-150m.

Daily I face severe neuropathic pain, tremors, issues with my HR when standing (tachycardia), reactions to foods I’ve always loved (currently react to most meals – including passing out) and some medications I’ve previously tolerated, the most extreme fatigue, unsteady walk, pins and needles, numbness and unresponsive legs, lightheadedness, dizziness, confusion and cognitive decline, coordination issues including fine motor skills (I’ve literally had to reteach myself how to write), breathlessness, tinnitus, gastro issues and a few more embarrassing ones.

I paid privately for most appointments in the first 9 months because the waiting list to see my neurologist was too long. As you’ve probably guessed I can’t work, and that money has dried up. Meaning 3 years on I am no further in figuring out what’s wrong with me or how to manage it. I’ve just done my PIP (Personal Independence Payment) review and had to face just how much worse I am now compared to when I applied mid-2022. I get maybe 3 hours a week (non-consecutive) that I can function. My mum is my carer now.

I need to find out what’s wrong. My greatest fear is not just that I will stay like this forever, but that I will get even worse. I was just 27 when this happened, I’m now 31. When I look at my life before, I am now living the most unbearable existence. My main ongoing investment has been in therapy, without which I probably would have ended my life. I have a very generous therapist who I wouldn’t have otherwise been able to afford. Alongside that, nearly all my spare money goes into caring for my aging dog, Bella, and keeping her comfortable. Bella has been my companion and lifeline through so much, and she herself has gone through a lot. She has had £20k worth of surgery since April 2022 due to detached lenses in her eyes, along with Canine Cognitive Dysfunction (Dementia). She now has a lot of medication and eye drops to slow the progress of her conditions and her bills alone total £300+ each month. She will always be my priority over myself. But I now realise I can’t care for her if I don’t seek help for myself.

Right now, I need financial help for a few things that I think will assist me, both in my daily life and in finding out what’s wrong and what can be done about it. Initially I’d like to invest in the following options:

Initial consultation via zoom with Dr Claire Taylor £300 – She is a private doctor who specialises in the conditions suffered by many with long covid and post vac syndrome, several I am suspected of having. She also specialises in Neuroscience, so she is well placed to understand the complexities of not just my body-wide symptoms, but also my Hemicrania Continua. She is booked for the next 6 months and I can join her waitlist, but I intend to check daily for cancellations to get seen as soon as possible and get a treatment plan in place. www.drclairetaylor.com
Visible wearable £50 – to monitor my health, let me know when I need to rest to prevent crashes and tell me if I can actually do anything that day. My crashes are severe, my health dipped in June, and often I don’t bounce back to where I was pre-crash, creating a new, lower, ‘normal’. It’s used a lot by those with Chronic Fatigue Syndrome (ME/CFS) and PEM (Post-exertional malaise), which I’ve been diagnosed with. Visible helps prevent the crashes and helps you come out of them faster.
Perching stool £55.99– This could help me do a bit more food preparation and cooking, Currently Mum has to do the bulk of this as I cannot stand for long without pain and an increase in symptoms, along with my body generally being weak. On the days my tremors allow me to use sharp knives, a perching stool could aid me in making the most of that.
Dunlopillo Super Comfort Pillow – £94. This is an odd one, but I spend a significant time in bed and that means extensive wear on my mattress and pillow. Right now, my mattress is ok, but my pillow has become worn and unsupportive. This is a pillow I’ve used since I was a teenager, due to having joint issues anyway. But the trauma to my neck and inactivity over the last few years means I need the right support while I’m stuck in bed and my current pillow just causes pain because I could only afford a cheap imitation.
A bit of extra cash to be able to pay for a dog walker. I’m so aware just how unfair this change in circumstances has been on Bella. She can only walk for 20 minutes at a time due to age and arthritis, but she deserves to be able to do this at least once a week. Unfortunately, that’s not something I’m capable of. The idea of a mobility scooter scares me and feels defeatist, I don’t think I’m there yet (mentally or physically), but Bella shouldn’t have to go without because of that.

Any extra donated will go to help me help Bella, and/or for tests and treatments advised in the consultation.

These may seem like small, affordable investments, but right now for me they are not, and my health is deteriorating rapidly. There are so many things I can’t afford like fixing my car, hiring a dog walker, new clothes that fit (I have to rely on vinted), physio or rehab (that the NHS won’t give me) or installing a shower so I could wash more often. Heck, if Bella needs a check-up with the vets soon, I have no way to cover it – and that’s what little I have left over each month is put aside to afford – the essentials like her 6 monthly checks for both her eyes and her dementia, my cars MOT and the excess for her insurance for both these conditions (£160 per condition). However, these things seem like the right investment to give me some direction with my health and improve both my day-to-day and Bella’s, even jusst a little.

I don’t ask for help; it doesn’t come naturally to me. But the fear of being like this forever, stuck in my bed, in the dark, for 80% of my day, is far greater than any shame or guilt I feel for asking. I have too many unfulfilled dreams to stay like this, but I’ve come to realise I just can’t fix this one alone. These are the ‘best years’ of my life apparently, and I’m too young to not fight to experience them.

I may consider continuing this fundraiser, depending on the outcome of my consultation with Dr Claire Taylor and what I can/cannot get help with via my GP following this. But for now, these are my goals and even just £1 could help me on my journey to getting some answers. Equally, just sharing my story would be greatly appreciated.

https://www.justgiving.com/crowdfunding/chloe-price-525

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

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