August 2024 – Letters From My Bed

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

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

Help…I think.

I never know how to start my journals. Do I just go straight in, do I do a gentle intro? I think I do both.

That was my gentle intro.

I had therapy this morning and it turns out I really, REALLY, needed it. So much has happened recently, not just my health struggles, that I’ve found it hard to process…because of my health struggles.

When you’re so unwell there just isn’t the space, brain capacity or even emotional strength to process other things. And that’s something that impacts me a lot, it makes me angry, pent up and frustrated and sad. But I don’t have the storage for those emotions either.

I’ve written before about how much my health has dipped recently, but the last few weeks have been brutal. I am so done. I’m so fed up of feeling like this, I’m so fed up of being stuck in bed and feeling so much pain.

I’m reacting more to food, most meals in fact and I now dread and fear eating. I don’t know what’s safe to eat and what I’m going to react to, or what level of reaction I’m going to have.

I’m in agony constantly, whether it’s my Hemicrania/occipital neuralgia, or burning pains wherever my skin is in contact with my bed, extreme stomach pains from whatever I’ve eaten or inflammation.

My biggest fear overall is getting worse or staying like this. This isn’t a pity party but I feel so useless in every sense and honestly it’s draining. Not being able to see my friends and family or be there for them, have experiences with them and make memories, not being able to do anything but basic care for Bella, not being able to do anything for myself. It’s torture and I know I have to try something.

I’m seriously considering a health fundraiser to help me access consultants and treatments that could potentially help me fight this. The reality is that Bella’s monthly costs keep increasing, and are only ever going to keep going up, and this leaves me with nothing to invest in myself now. You all know I’m being met with brick walls at the doctors and the reality is that I don’t know what I need to ask them for, and I don’t think they know what to offer me. I need direction.

I also fear what putting a fundraiser out there, with my story, would do. The looks, the comments, the trolls, it being unsuccessful. I don’t know, but my mind is busy creating a story.

A friend did suggest adding a ‘buy me a coffee’ to my blog as a way to kickstart this. I don’t get a lot of readers if I’m honest, but I am going to look into adding this to my blog. If you choose to donate or share I really would be so grateful.

But for now, I really need to rest – which is something else I’m struggling with because I’m so sick of it. But needs must. Then I’ll look at what I can do to try and fight for a more meaningful existence. As always, if you’ve come this far thank you and if you have any ideas or advice it would be gratefully received.

No, I can’t do that. But I will.

As a bit of a car nut, I’ve realised something rather sad about my weeks where I’m not able to make plans. The house opposite ours runs a barber shop, with various visitors throughout the day. But once a week they get a special visitor. Special to me anyway, because he literally makes my week. He pulls up in his purple RS7 which definitely has a non-res aftermarket exhaust system, and it rattles the fucking windows. It’s a thing of beauty, and the noise puts a smile on my face every damn time.

My head is beyond awful this week and has been for several weeks, likely exacerbated by the heat and stress. Which means I’m useless. No, less than useless. Mr RS7 has just been for his haircut, which has cheered me up today.

I’ve not got a lot to report. when I feel like this I often find myself writing things that could help my readers, other people with chronic illness, or those either related to or supporting someone with chronic illness. You learn a lot in a short space of time when you become ill, you learn what helps and what doesn’t. You learn the best kind of support you need from those around you. You’re probably also supposed to learn how to ask for help and support, but as I seem fairly immune to this lesson it would be rather hypocritical of me to write about it.

But perhaps that’s something I should look into, my inability to let go of my pride and independence. My inability to accept where I am and that this is starting to look a lot less temporary as the months and years drag on.

My friend asked me in the week why I didn’t ask for the help I need. I had to do my pip review and I finally got it sent on Monday. This I actually got help with, but only after my therapist pushed me to do so. I know I’ll be told I need another assessment as I was faced with just how much worse I am now compared to mid 2022. The last two months my health has taken an even bigger dive, and I’m still led here hoping that it’s just the summer heat and the deficiencies we’re trying to improve. But I also feel it may not be. I can hope but I knew I was getting worse, I just didn’t want to face it or admit it.

I’ve given in and ordered a BP monitor. My issues with tachycardia are becoming beyond self-management. I’ve been managing them for 3 years, always having bigger issues to deal with. Lying down would bring my HR below 100 again, I get up slowly, I keep hydrated by drinking at least 2.5l a day and I have limited caffeine. But none of these are working now and it’s causing me to feel dizzy, breathless and lightheaded every time I get up. I’ve always given Bella scratches before bed, especially if she’s going to be wearing pyjamas. She loves it, but I can’t do it and haven’t been able to for 5 weeks because it makes me breathless and dizzy, even though I’m sat on the floor. If I eat a large meal I’m dizzy, HR around 140 and have nearly passed out. It’s ridiculous.

I physically cannot wash and dress daily. I have to keep a tin of Pringles in my room for the days I can’t get myself lunch and feel hungry. But to be honest I’m rarely eating lunch at the moment anyway.

I try desperately to not ask for help to wash my hair, or get out the bath or to do Bellas meds in the evenings. I try to hold onto every last bit of independence I have. Everything I can just about push myself to do, even if it means propping myself against the worktops or risking another week in bed.

But I wonder what it is that makes me an incredible supporter and advocate for others, encouraging them to get the help they deserve, but not me. It’s something I’ve discussed in therapy. I know there’s a part of me that doesn’t accept what’s happened or just how unable I am, like asking for help is defeatist. There’s also a part that feels guilty for asking for help, like it’s putting too much on others. And then I think deep down there’s another darker part that thinks I don’t deserve help. There are others worse off than me than need the help, that I’m just not that bad. And of course shame has a large role to play here, the shame of admitting just how much I struggle to my self, let alone others.

So I’ve been working on that. I’ve been working on being more honest with my nearest and dearest. I realise, after it was pointed out, that it’s almost unfair to not let them in and know the truth. The truth that I get maybe 3 hours a week at the moment where I can do something. But that something has to be low key, sat or led down and preferably in a quiet, dark location. It can’t require me to think about an outfit or fix my hair and make up.

Wednesday I had to collect Bellas meds from the vet. Every month they mess up somehow and this month was no different. That isn’t a complaint, this aside I wouldn’t change them for the world. But it meant I had to stand at the counter for nearly 40 minutes while it got sorted. There were no seats. It was a marginally better day compared to most lately, I used my walking stick, I leant on the counter. I did all the things I could, yet it’s knocked me for 6 and I’m back to where I have been. HC is a 10/10, my body is on fire and I’m wobbly and shaky. Not to mention the impact it had on my HR.

The sensible thing would have been to ask my mum to collect them for me after work as her office is just around the corner. But she’s worked all day, she’s stressed right now, how can I expect her to wait 40 minutes instead? How is that fair when she already does so much for me?

Those are the questions that go through my head every time I consider asking for help with a task. My answer will always be ‘no’. And so the cycle continues.

I keep wondering whether to start a health fundraiser so I can pay for some private tests and scans. Or perhaps book an appointment with a scientist I know who has set up a long covid and vaccine injury consultancy – this could be especially helpful in getting advice on exactly what conditions I could have or what tests and treatments I should consider. But it all comes down to asking for help, the shame prevents this. The fear of what people will think of me, the comments said about me, the looks. Of course people are actually wonderful and incredibly supportive, but my mind likes to create stories that keep me trying to go through all this as quietly as possible. Perhaps one day I’ll have the courage to ask for others to help where the NHS aren’t.

I don’t think I’ve ‘fixed’ my inability to ask for help in writing this, or discussing it in therapy. But I do feel I understand it a little better now and that’s a pretty good first step.