trauma – Page 7 – Letters From My Bed

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

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.

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.

Envy, shame and loss.

So it turns out my awareness of my thoughts was barely scratching the surface. I’m grieving. I thought I’d done that and reached a place of acceptance but grief is not linear. Who knew?

I am also being quite hard on myself with these thoughts. Particularly when I tell myself that I should be able to do something. There’s a lot of shame around my limitations. I know I often hide my limitations, I will show people that I’m doing ‘ok’ and try to play the role of a healthy human while with them. I try to hide the pain I’m in, the intense recovery that follows me pretending I can do things – the consequences. Because I don’t want others to pity me, when I feel shame and enough pity for myself as it is. I don’t want to ask for help because I don’t want people to know the depth of my struggles, or to appear ’weak’. Especially when I keep telling myself I shouldn’t have to ask for help in the first place, I shouldn’t need it.

But of course I do need it. My reality is that I don’t get washed and dressed everyday because I can’t. I don’t walk Bella daily or even weekly, because I can’t. I get behind on my laundry, because I just can’t do it sometimes. Some days, like one day last week when I was home alone, I had to lie there feeling hungry because I just couldn’t make myself lunch. I couldn’t make myself lunch because I had no energy and I knew I needed to be able to drive myself to the doctors at 4 for my B12 shot. I couldn’t do both. Sometimes I don’t eat a whole meal because I haven’t got the energy too. I sometimes have to sit on the stairs until I can complete the trip up/down. I buy clothes based on how much energy it takes to put them on – low energy clothes and shoes because I can’t waste all my energy getting ready if it means I have none for where I’m going. The walk round the block should take 2 minutes, it takes me at least 10 and a break. I struggle refilling mine and Bellas pill boxes – I get confused, I lose count, my hands cramp, go numb or become really painful and inflamed. One day an item of clothing will fit, the next it won’t. Sometimes I can get my rings on, an hour later they may be stuck. I struggles to lift a full kettle, I have to use two hands. Often my tremors mean using the kettle is a no go, knives too. I have to sit down to chop ingredients when I do try to cook. The standing at the cooker part has to be minimal and will require me using the counter to lean against. I struggle to whisk Yorkshire pudding batter. I can’t lift Bellas dog food delivery anymore. I sometimes get stuck in the bath or my recliner. Sometimes even my bed. Sometimes I’ve needed help dressing or washing my hair. The burning pains in my hands, feet, legs and arms used to only become unbearable in the evenings, now it’s constant and there’s only so much I can do to help it.

What people may see sometimes is me pushing through and doing these things to appear ‘normal’ but not the cost that has. I could have pushed to make myself that lunch and gone to my appointment, but I would have suffered immensely and for days, when I am already suffering immensely. I could have prevented myself being able to drive there or back safely. I could have increased my risk of falling or failing. It’s knowing what I can and can’t cope with doing. I can’t make myself meals daily, 2 or 3 times a day. Not even once a day.

Yesterday I got snappy with my family who wanted to make my bed for me. I’m very particular about my bedding, everything has to be just so. The corner seams must line up, the label on the sheets has to be at the bottom of the bed. There are straps underneath my mattress which attach to my sheets to keep them tight because I can’t cope with loose or creased bedding. My duvet has to line up along the seams, it can’t be loose or wonky. My pillow has to be a certain way round. They wanted to help and I insisted on doing it myself, which is a mammoth task on a good day and I’m not having any of those right now. But they’d done a lot during the day, so surely I should be able to make my own fucking bed when I’d done nothing? I even saved and bought the bed that would make this easier. Now I’m paying the consequences of doing that, plus apologising to them for being a bit spicy. I wasn’t mad at them, I was mad at my own limitations and how much pain it was causing me. But my bedding was perfect and I finally had a good nights sleep, but at what cost?

So yes, I do get envious of others, I do feel bitter. It’s not against them, it’s against myself. Neither is right or wrong, it’s normal to feel that way. It’s how I deal with it, think about it and manage it that currently isn’t right.

So each evening I’m going to say what I’m grateful I managed to do that day. I might post them here, I don’t know. But I need to try and do this to change my thoughts into looking at the positives rather than giving myself a hard time.

Today I’m grateful I didn’t cancel my therapy session and got to attend and sit up for the full hour. I’m also grateful that I have another B12 injection later that could give me a chance at feeling a bit better.

I also reached out to a friend immediately following therapy (following Lee’s advice) and asked for help with my PIP review form. I didn’t want to because I don’t want others to know how much I actually struggle, I didn’t want to face it myself, but I need the help. Both with the form and from receiving the PIP itself.

I know currently I am at my worst physically and that’s likely where a lot of this is coming from. But ultimately I am always going to grieve what I can no longer do, who I no longer am and feel a little jealous of others who do get to perform actions and activities without ever having to think twice about it.

The things I think about too much.

When my health initially changed post vaccine I was so caught up in it that the world and life ceased to exist for me. I mean in the sense that I just couldn’t even think about it, except for in my darkest thoughts. I didn’t notice things like what others were doing and what was happening in the world. I was caught up in everything I was missing out on, things I couldn’t be a part of and this deep grief and loneliness.

But this changed repeatedly throughout the last 3 years. Recently, I’ve found I am very aware of what I can’t do; Things that I should be able to do, things that I was able to do even 2 years ago but not now and things I wish I could do. I’ve noticed this new pattern of comparison that is going on in my mind that I know isn’t good or helpful, though I think my awareness of it does help in it not being too detrimental.

I see what others do, without even thinking, because it’s the sort of action that most don’t need to consider. For example, I was on the phone to my brother and he asked if he’d shown me his DIY chiminea. He hadn’t so, despite being comfortable on the sofa, he immediately got up and wandered into the garden and turned the camera onto the chiminea to show me. Absolutely normal behaviour for a healthy, able bodied person. The chiminea was cool, he’d made it using beer kegs and it’s designed to look like a piglet – with ears and a tail too. But I wasn’t focused on this, it was my sheer shock at him getting up to show me like it was nothing. Because for most people it is.

I don’t know when this switch in my thought pattern happened so I guess it was gradual. Or perhaps I am feeling more aware of my limitations. Perhaps I’m struggling with feelings of envy. I don’t know. What I do know is that I could never. Especially with my current energy levels. If the roles were switched it would be ‘oh well you’ll have to see it next time you’re here’, or ‘I’ll try and remember to take a photo next time I’m in the garden for you.’ But I don’t get to just get up and show someone something in a different part of the house without careful consideration or pre-planning.

No sir, no spontaneous energy expenditure and physical activity here.

I can only assume that I’m not the only physically limited person to have these thoughts, but at times they can be quite consuming. My sister is staying with us currently and it’s been wonderful having her here. She’s also been helping a lot with cleaning and organising throughout the house. Every. Single. Day. It’s mind blowing. She’ll do a day at work, come home via buses and walking, clean the kitchen, do the washing up, stick some laundry on, walk her dog, nip to the shop, feed the dogs, do anything I need help with and have a bath. Some evenings she’ll even cook dinner too.

Mind. Blowing.

It’s wild when most days I can’t do even one of those tasks. I couldn’t do all those tasks in a fucking month and normal people get to do that in a day without thinking about it. Not even in a whole day, they can fit it in after work with time to relax as well!

And I’m led here thinking damn they are amazing and lucky. All that energy, all that useable free time. I have a LOT of free time, but I don’t have much useable time. I sure as shit don’t have the required energy, and what energy I do have I’d have to allocate some to really think about how I could achieve a task. How can I make this task manageable? How can I limit the consequences of this task? How, how, how?

My birthday was on the 4th and I’ve still not managed to respond to every message I received. It’s reaching a point where I fear people will think I’m ungrateful and rude. But I’m not, I’m immensely grateful. I just haven’t got the energy to respond to them all and engage in the multiple conversations I know my response would initiate. I don’t text much for that very reason. I only really text to arrange to meet friends and family face to face every few weeks or so because I haven’t got the capacity to regularly text like most people. I also have my PIP review to complete and it’s become so daunting that I’m putting it off, knowing I’m running out of time. But it’s going to take up so much energy that I currently don’t possess, as well as having a big impact on my mental health.

Anyway, I have therapy shortly so I’ll let you know what we discover on this topic.