rescue dog – Page 6 – 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

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.

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.

I had it bad, but also so good.

On top of my current thoughts and feelings I also have to face my PIP review. I’ve requested my second extension because I just couldn’t bring myself to face it. Yesterday I enlisted a friends help to talk me through it, but now I actually have to do it.

What this means is that I have to review my initial application and tell them if things are the same, worse or better.

I’ve made no secret of how devastating the changes to my life have been over the last 3 years. It took me a year before I even considered filing for PIP or other benefits because I was so adamant that the change would be temporary.

What I didn’t know, that I do now, is just how fucking good I had it at the time of my initial application.

For instance I wrote ‘I can only walk Bella 2-times a week, for 30-40 minutes with a walking stick. But due to the impact this has on me I can’t do this on consecutive days and it means I can’t do other activities like a food shop.’ I’ll be honest I don’t even remember being able to walk so much or so often with Bella. It’s like it’s been erased from my memory, but then I find a lot of things have over the last few years. Another good reason to keep on top of my writing. But ultimately, from what I read, I sacrificed everything else to be able to walk Bella a few times a week, including seeing people and self care. So it may sound like I could do a fair amount, but it meant I could barely do anything else and I wasn’t walking fast, I’d barely manage one field in those 30-40 minutes.

Now I only get to walk Bella maybe once or twice in a 3-4 week period and for a maximum of 20 minutes. With a stick, with rest stops. Often tripping or trying to fight against legs that don’t want to get me back to the house safely. I often find my legs become unresponsive, they don’t ache or hurt, they just don’t listen to signals after a while and so they don’t lift sufficiently to avoid trips or scuffing…which also leads to trips and a feeling of not being safe. People probably don’t understand when they see me why I use a stick if I’m walking anything more than 100m or so, and this is why. It significantly reduces my fall risk, I can walk steadier and therefore more safely too. It also gives me something to lean on when I have to rest.

Of course there are many other examples throughout my application of how ‘good’ I had it when I was already really limited. I just used being able to walk Bella as an easy example to explain, plus being the thing I miss the most and I would trade the world to walk her 2-3 times a week now. I guess that’s down to hindsight, because I just think how grateful I’d be to have those levels of limitations back. And I was significantly limited then, I wouldn’t have received help if I wasn’t. It’s really not as easy as some think it is to get that help.

But compared to now, I had it so good.

So perhaps having my review at this current time isn’t the best for me mentally. Perhaps it’s my review that has triggered the thoughts of comparison, resentment and shame I’ve been having. Perhaps it’s all just a coincidence designed to test me to the limit. I don’t know.

I do know it’s making me feel particularly shitty and I really don’t want to do the review because I dread to think how I’ll feel once I’ve compared then and now in full. But I also know the stress of continuing to avoid it won’t make it any easier. So I’m going to do it, just bear with me while I feel a little sorry for myself and focus on overcoming this trauma.

The circle of life.

Right now I am fully at capacity and falling into old habits of bottling everything up and trying to make sure I don’t spill my situations and emotions on other people.

My grandma is deteriorating and slowly transitioning from this life to the next. It’s incredibly painful to watch and have such up and down visits with her. I will of course keep visiting because those fleeting moments of the Grandma I know are so valuable and I will savour every one of them. I also want to be there for her, for what is likely an incredibly scary time. Even when she tells me I shouldn’t have to see her this way, I will, because she’s my Grandma and I love her. And I’ll keep visiting so she remembers that.

So at the moment I am just incredibly worn out from keeping family up to date, facilitating visits and visiting myself or being with Dad and Tash during appointments.

On top there is the situation with my own health. I had a call a few days ago from Neurology to say my neurologist ‘doesn’t want to wait any longer to see me’ and I have an appointment on Monday morning. I haven’t even had an appointment through for my CT scans yet, and you’d think the waiting list for those would be significantly less than the ones for neurology. So I’m of course a little apprehensive, maybe even a little scared. I know I need to find out what’s going wrong with my body, and it’s a relief that the healthcare system finally wants that too. But to skip the queue like this makes me worry.

And then there’s Bella. My sweet, sweet girl who seems to be on a steep downwards trajectory. Her tantrums are intense and when she’s not throwing one she is needy or crying. I don’t know if she’s crying in pain or what she’s trying to tell me. The check up and bloods were only a month or less back so I don’t think it’s anything more than a dementia decline. But I am terrified that we’re getting close to her telling me she’s ready. And I am absolutely not ready.

I am too scared to feel any of these things because of really do think they will consume me. I’m scared of where I might find myself, but at the same time the sadness, grief, worry and anger are already consuming me. I’m permanently overwhelmed and feeling absolutely awful at all times. But I still can’t seem to open those doors to start the processing. I guess I’m scared that if I open them I won’t be able to pull myself out again.

So that’s where I’m at. That’s why I’m quiet, that’s why I’m not engaging. It’s one of the realities that regardless of my life coming to a stop 3 years ago, every thing else carries on. The normal circle of life continues and I have to somehow find the strength within me to cope with that as well.

Bella and I.

I feel like I’m holding onto a lot so I’ve come to write and see what comes up.

I had therapy Wednesday which was a great session and much needed. In truth over the last 6 weeks or so I’ve been handling a lot with family and my own health. It’s been a balancing act that I truly failed at and as a result I’ve just been running at constant capacity and still having to keep going. Of course my head had been on fire as a result.

I finally got word that I’m in for reprogramming on April 24th and it couldn’t come soon enough. This programme just hasn’t done a thing and I largely expect I’d have felt the same had the device not been on at all. Except I’ve had a tender head on top where the stimulation is running. So I’m not chuffed and very much looking forward trying again. I wish there was a way I could make sure it’s right this time, I wish I understood it more and understand why when we have got it to work incredibly well it suddenly stops. I wish, I wish, I wish.

Bella had her health check and vaccinations Thursday. This gave me an opportunity to update the vet on changes with Bella and understand these changes a little better. When I understand it makes it a lot easier for me not to get too frustrated and annoyed – which every pet owner does at some point! The best way to describe Bellas behaviour the last month is manic. Crazy tantrums which is yapping, yelling and deep barking at least 10-15 times a day – this is also sometimes accompanied by a heavy paw landing on top of me when I try to ignore her.

I know it sounds awful to say that I do try to ignore her sometimes but the truth is that I always know what she’s asking for. She’s always been very expressive and I know immediately what each tantrum is in aid of. The trouble is that sometimes there isn’t a demand behind the tantrums now – not food, not a blanket, not going out, not attention. It’s just letting off steam, often when she’s feeling anxious or confused. So as soon as I know it’s letting off steam, I let her get it out.

But back to the manic. I explained to the vet this is largely around food and she’s become quite insistent that she’s starving, neglected and never fed. In truth she’s getting more food because of this – but because she gains weight very easily the food she gets extra is carrots, cabbage, broccoli and any other dog friendly veg knocking around. So after more explanation and questions the vet explained to me what’s making her so manic.

Bella is forgetting that she’s eaten, some days mere minutes after finishing her dinner. And because her brain is forgetting it, so is her body – meaning it isn’t telling her she’s full once she’s forgotten. So whilst I haven’t been getting particularly mad at her, because we always have veg for her to eat, I can’t deny that living with Oliver Twist isn’t challenging when she gets quite worked up over it.

Of course the last month I’d say I’ve seen – including what I’ve discussed – quite a dive in her dementia symptoms. She’s been waking me every night, the extra tantrums and food. But she just won’t settle. She’s agitated quite often and the only time she’s calm and relaxed is if I allow her to lie on top of me in the evenings. A 30kg weighted blanket, who flops around like a beached whale with her sharp elbows. But she’s calm. I don’t allow it every evening, but more often than not I give in – it’s something else she’s quite manic over and ignores all versions of ‘no’ she’s ever been taught. I give in, not because it’s comfortable for me, but because if that gives her the few hours of calm she’s craving then that’s ok with me – to hell with the bruised legs.

Over the last 3/4 days she has been a little calmer and she hasn’t woken me up for 4 nights now. However, the decline cannot be ignored, especially with the extra lumps and bumps that keep appearing. She’s been plagued with fat lumps for years, mostly the size of a pea, excluding the golf ball on her chest. So she’s in next Friday to have a starved blood test. They’ll do a full panel and just make sure there’s no other red flags that could have caused this decline along with making sure her body is tolerating all her medications.

So I’m worried. I’m always worried about my soul dog, but now I’m extra worried. In fact I’m terrified because I don’t want anything else to be wrong with my sweet girl, I’m not ready to make any tough decisions. And I’m worried because if something does come up I genuinely have no idea how I’m going to pay for further treatments, tests or medications. Thankfully the vet has agreed to put the bloods through the insurance under the claim for her dementia so I don’t have to pay the excess, but I do have to cover 20% of the cost. So please cross your fingers because my girl doesn’t deserve anything else – she already pops as many pills a day as me!

So that’s where I’m at. I just feel like I have a lot on my shoulders again and the stress does my health no good.

That being said – I’ve accepted an invite to join my brother, his fiancé and their kids at legoland for a day at the start of May. As you can imagine this is going to come with huge consequences, which is why doing a whole day out like that is rare. Most of the time I just don’t consider the risk being worth the reward – it sounds callous but the consequences really will be unbearable. So I’ve also made the decision to hire a mobility scooter for the day. This should hopefully make it more manageable and less exhausting or taxing on my body. My greatest hope is that the kids see me as the cool Auntie with the go kart.

I’m sure I’ll come with more updates or happier news at some point, but for now I’ll end with the positives that have come from these heavy situations. Because while it’s been heavy, both my therapist and I agree that I am and have coped remarkably well. And then I burst into tears while saying ‘I really am coping’. Happy tears, tears of shock, because this time last year I really wasn’t coping and wouldn’t have coped with everything that’s been going on. But I am. I have my therapy where I deload, but it’s just that; deloading. I don’t need to process, seek advice and extra support or have a safe place to admit that I’m drowning – because I’m not. My health is making it hard, these things all take their toll. That’s the part that’s the problem, that’s the part that I’m perhaps not always coping with. But mentally and emotionally I am coping and I am ok. I have dark thoughts quite often – they come to visit like an old friend. But they don’t bother me now, we greet each other briefly and continue on in separate directions. They never stay and I don’t fear them now. Because I know I’m ok. When my head is a 10/10 and I fleetingly wish that I could just end it, I remember that it’ll soon be tomorrow and tomorrow will be different. Or in a few hours it’ll be time to take my evening meds and then it’ll be bedtime before I know it – and I know I can cope a few more hours until then.

So while everything is a lot I am ok and that’s a wonderful thing to be able to say.