chronic pain

Caught in a trap…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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?

Perhaps I bring my own hang ups to this, but I’ve always 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 finest 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…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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 gave 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.

If you enjoy my writing you can support me here or on Patreon

I need a little time…

~ somethinginthewayshemoves

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.

Make it easy…

~ somethinginthewayshemoves

It’s been a tricky couple of weeks, so haven’t been out much. It’s so hot that I’ve been at home in my pants a fair amount. I thought I’d share the comfy & cute looks I’ve been sporting when I have crossed the threshold.

This dress was a gift from my Mum. It’s an excellent choice for this weather. It’s really light, but gives good coverage to avoid sunburn. I love the print and the flouncy skirt.

alt is wearing teen dress with yellow floral print
Dress – Gift
Crop top – ASOS Curve
Kimono – Simply Be

For a wee cinema trip with the boy I popped this dress on. I got it a few summers ago, but haven’t worn it very often. I didn’t realise you could see my knickers through it until I took this pic at the end of day, oops. Another excellent summer for this stifling weather. Loving the tie detail too. We saw the new Croods film & the boy thoroughly enjoyed it.

ly is wearing short gingham dress with tie detail at bust
Dress – ASOS Curve

Finally, today’s outfit. I had one of my nephews this morning, but was too sore for adventures. I introduced him to minions & had a little carry on at home. This skort is my new fav as it is so easy to wear. I teamed it with the comfiest bandeau top & my trusty pillow slides.

ly is wearing blue floral print skirt, black vest top
Skort – Simply Bev
Bandeau – Primark
Sandals – Pillow Slides

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Be running up that hill…

~ somethinginthewayshemoves

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Independent love song…

~ somethinginthewayshemoves

I love supporting small business & independent makers. When I went on a little treat splurge last week I hit up some vendors I’ve been admiring on Instagram & I thought I’d share my treasures.

I’ve tried various symptom trackers and all have fallen short. Be they apps or physical products they never seem to grasp what I need. So, discovering a collection of trackers/planners designed by a person who is chronically ill themselves was a relief. These products give me the space to personalise & encompass all my varied symptoms. They also understand the kind of things I want to keep track of. Impractically Imperfect know all of that. Plus they get that I need it to be easy.

Weekly planner & symptom tracker with floral border
Impractically Imperfect

My little purple laptop has been needing a makeover for a while. I started with a couple of stickers I received as gifts with orders, but got waylayed. When I realised that one of my favourite pin makers was also doing stickers I got right on it.

Purple laptop with bright coloured stickers
Stickers – Hand Over Your Fairy Cakes
Tories lie sticker – grlclb
Friends Stickers – Gift

My last treat is one of those practical things that is also beautiful. I am sick of digging around on my bag for my mask when I need to put it in. This colourful chain will put an end to that problem. Even better I can also stick it on my sunglasses to stop me losing them too. Does this mean I am an old lady? Probably, at least I’m ageing with style.

Rainbow mask chain on purple background
Mask Chain – Loop and Boogie