Why am I like this?

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

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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 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.

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This week I have mostly been…

Spoonie life can be tough. Meds only do so much, which means you have to discover your own coping strategies. 

Music is one of the things that helps me when my symptoms are unmanageable. Specifically, I like to lie in a completely dark room & play loud soothing music. I try to imagine the room flooding with the sound & let it wash over me. Obviously i am attracted to beautiful music, but for me, I’ve always needed lyrics that speak to me too. In particular I gravitate towards songs that express emotions I am wrapped up in. 

All of this leads me to introduce some new content. I hope  to regularly share with you the tunes that are easing my path. 

This last week has been dominated by women. My choices have been perhaps a little sombre, but that also have a dreamy quality. Without further ado, this week I have mostly been listening to,

I have no idea why it has taken me so long to find Laura Marling, but I am so glad I did. I heard this song, Darkness Descends, in a hospital waiting room & had to shazam it. The lyrics seemed designed for me, as though someone had climbed into my head & taken notes. This song is the musical embodiment  of autum. When I listen to this I feel like I’m wandering out in the crisp, fresh chill of a perfect September day & that’s a nice escape from reality. 

Next up is a bewitching offering from an old favourite. Firewood by Regina Spector sounds so gentle, but is really a rousing kick in the arse. With chronic illness there are times when life is too hard. In the midst of a flare when you feel horrendous every moment of every day, you can start think it’s just not worth it. Firewood is basically saying I know it hurts, I know it’s impossible, but you’re still breathing & you have to live. Spector manages to articulate this message without being patronising or dismissive. I love it. 

Spanish Harlem is a song I’ve been playing since childhood. It’s a tune that always made me feel bright & breezy. Rebecca Pidgeon’s version takes it to a new level. The tone of her voice & the more floaty arrangement is lush. I also like the gender switch, these words sung by a woman have a much less possessive feel.

This week’s final earwig is Lana Del Rey’s treatment of Once Upon A Dream. I first heard this when I took my niece to see Cinderella & haven’t been able to get it out of my head. The original Disney version is too sickly sweet for me, but Lana’s dark & twisty take gives me all the feels. This song perfectly fits my brief; it allows me to feel totally immersed in the music.