The Fear…

I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.

ly is in a hospital bed wearing a face mask and hospital gown. She has leads attached to her chest

On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.

I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.

I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.

My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.

For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.

Black cat snuggling on blankets being petted

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A week(ish) in pictures…

It’s been a while since I did a week in pictures. Mainly because I have not been doing anything all that exciting. I have had a few family dos of late, so I’m doing a share.

First up was my youngest nibling’s first birthday party. The first year of these baba’s life has gone at lightening speed. They have been an absolute delight from day one and continue to be wee darlings. They are now very much on the move, starting to find words and full of fun. Their party was lovely. The babies enjoyed their new toys, grown ups enjoyed a cuddle and bigger kids loved running riot.

Dress – New Look
Tights – Pretty Polly
T-Shirt – Gift
Glasses – Where Light
Is there anything cuter than babies in tiny party hats?

Following on the family fun theme I had a gorgeous Easter lunch with my Mum, Sister & her boys. My sis made a superhero afternoon tea with plenty of vegan friendly options for me. The boy opened some Easter gifts and then we set off to his swing park for a bit of carry on.

After all that activity, I required a wee bit of rest. I had a quiet few days at home. Wore my comfies, tried to finish some work and painted my nails. I also had some yummy comfort food & bought Bronan some new catnip, which went down well. Strangely it also increased his paper fascination.

Nail Polish – Barry M High Vis

Thursday brought some Auntie time. My sister needed me to watch the boy for a few hours in the morning. This worked out perfectly as it gave him an opportunity to try out the blocks that Geomag* kindly sent me. I had intended to get a few of my littles to try them out, but this boy fell in love with them. He played all morning, took them home to play all afternoon too. The Magicubes are magnetic blocks that connect and hold on all six sides, meaning kids can build anything with them. I’ll definitely be buying more for the rest of my nibling gang.

Very pleased with his dog and dinosaur

I finished off the week with blood boost. A transfusion can be a nuisance, but necessary. Ultimately I am very grateful to have access to the medical care I need. Plus it gives you a good excuse to stay still and listen to a podcast all afternoon. I came home to huffy cat (annoyed that his dinner was late) & a lovely sunset. Not the wildest Friday night, but I’ll take it.

Big thanks to blood donors!

* GIFTED

Something’s gotten hold of my heart…

As I have mentioned, more than once, I having been some extra health issues. Yesterday I saw my GP and she gave me some answers. Unfortunately they were neither want I expected or wanted them to be.

It seems that long covid has become permanent a more of a problem. The tachycardia and breathlessness that I have been experiencing since having covid in Oct 2020 have been significantly worse over the last few months. I am breathless after a few steps. My head spins the minute I stand up. I faint daily. My heart tries to burst out of my body and my chest hurts. All the time. In the past when I felt like this it has been related to aneamia & b12 deficiency. I have had lots of issues with really low haemoglobin and although I never get to ‘normal’ my bloods aren’t dangerously low at the moment. We did a bunch of treatment, but I didn’t feel any different. I had some more tests, kept a symptom diary and recorded my heart rate a few times a day. My GP’s conclusion is that covid has damaged my heart function.

She is fairly certain that I have some kind of heart arrhythmia or PoTS. The prospect of neither fills me with joy; PoTS in particular is very frightening. I have been referred to cardiology and more tests will ensue. I really expected these issues to be related to existing conditions. It was a shock to be presented with a possible new diagnosis. The thought of these symptoms not improving or even worsening is overwhelming. I have enough health problems. I don’t need anymore.

All of this to say two things. Covid is no joke. Even if you get through the initial illness ok, there is no telling what it will do to your body. Please don’t pretend this pandemic is over. There are still huge communities that of sick and disabled people who are high risk. Even healthy people can be really badly effected. Wear a mask, keep your distance, wash your hands! None of these things are hard to do. And, I am feeling scrambled. I don’t know how to process this new information. Physically I am a mess. I’m very apprehensive of what is to come & my head is all over the place. So, please bear with me if things get inconsistent around here.

close up of ly’s  face wearing brightly coloured mas and thick black glasses

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Caught in a trap…

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Comfortable…

We’re all familiar with those comfort zone quotes, yes? Basically the message being you have to step out of your comfort zone to achieve success. There’s a grain of truth. Sometimes you have to try new, scary things. There are certainly times when you must push yourself. What happens to that wisdom when comfort isn’t exactly part of your repertoire?

Magic is on the other side of your comfort zone in blue letters on cloudy sky background

Perhaps I bring my own hang ups to this, but I’ve all read this kind of advice as a dig. To me it feels like being told I’m not brave or ambitious or working hard enough. Long before I had physical health issues I struggled with mental illness. As a result, comfort has been hard to come by. When your head is making you feel that everything is wrong, you’re never very comfortable. The world is an assault. Every decision is fraught, navigating daily life can be arduous. Living in that state makes running away from comfort the antithesis of healthy.

Jump to now, when I am somewhat healthier mentally, but much more unwell physically and it seems more nonsensical. I’m not sure I remember what real comfort feels like. I wake up in pain, I go through my day in pain and I lie down at night still in pain. My mind is continually balancing what I can do against what needs to be done. Even in moments when I am physically resting my thoughts are rarely in repose. When washing ones hair or making a phone call is ‘out of the comfort zone’ is doesn’t feel like the magic lies there.

In fact, I’d go so far as to say my best work comes when I can create as much ease as possible. I have a tiny office in my home with a desk etc, but I do much of my writing with my laptop on the sofa. I rebel against traditional work clothes and wear what I feel like me in. I say no to projects that I know will be too much. I give realistic timescales and I guard my boundaries. When my body/mind or both are screaming, I stop. I do so because I know what lies beyond that line is breaking point. I am aware that this may go against much of hustle culture, but I believe I produce magic when I am whole.

A line of matches.  Going from unspent to cmpletelt burnt out o

This doesn’t mean I don’t stretch myself. I give talks when public speaking is absolutely not my strength. I do so in ways that are safe for me. I spread them out, I’ll talk only on topics that I feel passionate about & to groups that I think are worthwhile. I lay myself bare in articles, but only on my terms. I have undertaken things that I doubted I was capable of; I did them when I was up for the challenge. I have never found bulldozing my limits to be productive.

I live in a world where comfort is rare and precious. Almost everything involves some kind wrestling with myself. I do not enjoy it. I am not prepared to make that a virtue. What’s more, I contend that this applies to most. You shouldn’t have to go to war to succeed. Your level best is good enough. We all need a hard no in our vocabulary. My best lives in a cocoon of measures that help me feel my best. I’d suggest that yours might too.

Ly  is wearing an aqua dress with floral leggings leaing against a post with a hand on her hip n

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Don’t leave me this way…

Since we seem to be heading full steam into SUCK IT territory for the disabled & chronically ill I wanted to talk about my experience of covid. There has been an overarching theme of those with existing health conditions being dispensable from the start, but now it’s pretty much being explicitly stated by our leaders. I want everyone to know how frightening this is for those of us that so many are happy to sacrifice.

As a person with chronic health issues (arthritis, fibromyalgia, stomach disease, anaemia, PCOS) I took covid seriously from the beginning. Lockdown was a complete lockdown for me. I stayed at home. I had no visitors. All my essentials were delivered. The only contact I had with anyone was the occasional driveway visit. My sister or bestie would stand in my drive and I’d sit in my open from door. I didn’t touch another human being or leave my house for months. I had hospital stays without visitors, didn’t celebrate my 40th birthday and spent Xmas 2020 at home on my own. My lockdown stretched on further than the official stay at home orders. Since early 2020 I have spent the majority of my time at home and I have been scared since the beginning. I had no idea what covid might do to me. I’ve experienced catching bugs or viruses that were no biggie for others, but sent me to the hospital. Every time I heard of someone dying being caveated with they had existing health problems, I knew that could be me. This pandemic has always been an emergency situation for me & those like me.

I now regularly see family & one close friend. I wear a mask, sanitise, stay outside as much possible. If I must be inside I go to places that follow all covid precautions and I exercise extreme caution. Doctor appointments aside I leave my home about once a week. I still have everything delivered and avoid contact with those outside my immediate circle. I do home tests before and after I go anywhere. With a couple of exceptions a restricted life has become my normality.

I contracted covid 19 in oct 2020. At that point I was spending 99% of my time alone at home. I was seeing only my sister, mum & nephew and wasn’t visiting anyone indoors. I still managed to catch the virus despite none of the family I was in contact becoming infected. The acute illness was not severe. It lasted about ten days & felt like having a stomach flu. I had more gastric than cold/flu like symptoms. My cough was very mild. I lost my sense of smell & taste. I felt terrible, but I didn’t require any medical attention. In the following weeks I really struggled with breathlessness & racing heart but assumed this would pass. It did not.

15 months later I am still dealing with long covid. My already limited mobility has been massively impacted. I become breathless even moving around my own home. I have to sit even to brush my teeth, make a cup of tea etc. I have overwhelming fatigue, brain fog and widespread pain have markedly intensified since having covid. I experience palpitations and chest pains on the slightest exertion. My heart rate regularly climbs to heights whilst trying to complete the most basic of tasks. I have been hospitalised on 4 occasions because my heart rate would not slow down to an acceptable level. Drs can monitor and treat symptoms, but they know almost nothing about long covid. They can’t tell my why these symptoms persist or if they will ever go away. My chest x rays are clear, my heart is not damaged. The tachycardia & breathlessness are a covid mystery.

A frightening and very real mystery. It is scary to feel as though your heart is going to burst out of your body. Or to be so out of breath that your head spins and chest burns. It’s a million times more terrifying to be told that the experts have no idea why it is happening or how they can make it better. Fear has been common thread. 2021 has been a really hard year for my health. All of my existing symptoms have worsened. The added problems have caused me serious problems and I think I have picked up every cold, stomach bug & infection going. All of which has been alarming. I’m worried that the next illness or flare might be the big one. I’m stressed about all the work I can’t do and the financial repercussions of that. I am chilled at just how little I am now able to do before becoming too exhausted/sore/dizzy/breathless to continue. Most of all I am terrified of what could happen if I get another variant of covid.

I am fully vaccinated (& boosted). I have masks galore, anti bac in every bag & pocket. I still leave parcels & deliveries by the door for an hour before I touch them. I bought a device to sanitise my phone. I’m never in crowds. I rarely go out. I’m acutely aware that I was being even more careful when I caught covid the first time. Every single aspect of my life has been affected by this pandemic. I know I am not alone. Most people have sacrificed. Many are in the same boat as me & others in far more treacherous vessels. I understand that this has been a collective trauma that everyone is eager to put behind them. I just wish more people would understand that this isn’t over yet.

When you justify the need to ‘live with covid’ by saying that most healthy people only experience mild symptoms I am the exception in that sentence. People like me will die or be permanently disabled if we ignore how dangerous covid still is. I understand that you want your life back. You want to stop worrying and missing out. I do too, but if we throw caution to wind now it’s not without consequence. If we pretend that covid is just another part of life we are throwing the sick, disabled, old & vulnerable to the wolves. I believe that those lives are worth as much as any other. Our needs are already ignored in so many ways, please don’t abandon us altogether.

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If I had a little a money…

In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.

It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.

So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.

Travel

I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:

  • Hospital App – £11.80
  • Visit Bestie – £11.30
  • Vet – £8.60
  • Pick up Bronan’s Prescription- £8.80
  • Post Office – £8.60
  • Work Meeting – £22
  • Weekly Total – £71.10

Pain Relief

Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.

  • Heat Pads – £5 per 3 pack.
  • Tens Machine – £65
  • Tens Pads – £5 per 10.
  • Long Hot Water Bottle – £20
  • Microwaveable Heat Pouch – £15
  • Dragon Balm – £2.50 a jar.
  • Lidocaine Patches – £60 per 10 pack.
  • Vape – £35
  • Cbd Oil – £15 per 50ml.
  • Freeze Spray – £1
  • Paracetamol – 56p per 12
  • Massage – £70 per 60 mins.
  • Kinesiology Tape – £5.50
  • Yoga Mat – £20
  • Foam Roller – £12

Disability Aids

I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.

  • Walking Stick Ferrule – £5
  • Easi Reach – £10.99
  • Easy Open Food Containers – £25
  • Jar Opener – £5.50
  • Easy Veg Chopper – £20
  • Multi Bottle Opener – £5
  • Auto Can Opener – £15
  • Lotion Aplicator – £8
  • Walking Stick Seat – £25
  • Sock/Tights Aid – £8
  • Bra Angel – £17
  • Hook/Zipper Assist – £6
  • Suction Grab Handles – £28
  • Shower Seat – £35
  • Wearable Tens Holder – £20
  • Press on Lights – £10 per 3 pack.

Services

There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.

  • Grass Cutting – £45
  • Hedge Cutting – £60
  • Weeding & Garden Tidying – £100
  • Wheelie Bin Cleaning – £8
  • Window Cleanimg – £8
  • Bathroom & Kitchen Deep Clean – £175

On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.

Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.

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Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

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I need a little time…

I have been spreading myself a little thin & it’s starting to show. Hence, I’ll be taking a little break. I have a few posts I made earlier so I’ll be popping out of hiding periodically. In the mean time if you miss me you can check the links.

Ly is wearing floral dress and peeping out from behind a curtain.