spoonie problems

Hurting Time…

~ somethinginthewayshemoves

I have been struggling with really high pain levels for quite some time. I’m trying changes to meds and pain relief strategies. My dr has ordered some tests, but so far I have not found relief. When pain overtakes me like this I seek one thing; comfort. Here are some places I have taken refuge recently.

Alan Bennett

I was delighted to discover that Alan Bennett had released a new volume of diaries and stories. I stumbled upon Bennett in my late teens/early twenties. I saw one of his books on sale and it piqued my interest. I fell in love on the first page and have devoured his work since. His writing feels like sinking into a warm bath. His memoirs paint the picture of a kind, funny and intelligent man. He always seem to be on the write side of important issues and handles life with grace. His plays are genius. So well observed and engaging. Basically I gain a feeling of well being from immersing myself in his words. If I’m too sore to sleep at least I can get into bed with these comforting pages.

An Oldie

This one is random. I saw an advert for a streaming service that included a really old sitcom that I used to love. The sitcom is As Time Goes By, it’s an early nighties show starring Judi Dench & Geoffrey Palmer. The premise is an older couple reuniting after being separated for 30yrs. They were in love in their youth and lost touch via a postal accident. Both thinking the other had rejected them. They are flung back into each other’s lives and fall back in love. It’s a gentle comedy. It’s also really lovely. Second chances, fate, the one who got away all feel romantic to me. Anyway, I of course downloaded the service and binge watched the delightful lot.

Music of The Night

Pain like this is usually accompanied by insomnia & that is currently the case. Sometimes even if I can’t sleep I will try to at least lie down and rest. For this I need a dark, cool room and some soothing music. Weirdly, one of the genres that relax me is musicals. The Lloyd Webber/West End type. I’m talking ‘Music of Night’, ‘Send in The Clowns’ kind of fare. Something about all those soaring emotional notes soothes me. Thus, I may recently have been spending the wee small hours singing show tunes in the dark.

Bru Boy

Finally, there is my boy. Bru is a very snuggly cat. Like most cats he seems to sense when I am having a really hard time. He will come lie with me in bed or climb right up on my chest to comfort me. He also does a very cute head butt thing. If I ask for kiss, he headbutts my mouth. He also grants me a little grace when I’m struggling and offers no complaint when breakfast is a late. I have been extraordinarily lucky with my beautiful cat companions. I am forever grateful.

If you like what I do you can support me on Patreon.

Why do you have to be a heartbreaker…

~ somethinginthewayshemoves

I have an app that is designed to monitor symptoms of chronic illness. I wear a monitor on my wrist to check my heart rate, oxygen level, quality of sleep etc. It’s helpful. It warns me when my vital stats are out of sink. It records my heart rate variation, which is a big indicator of how well my body is coping. It has also been good to have an accurate idea of how much sleep I am getting (not much). You can rate symptoms every day and compare over time how various issues are affecting you. Overall, would recommend the app.

There’s just one thing that gets me down. The final thing that is recorded daily is ‘crash’. Basically, did I run out steam that day. Sadly, the answer is yes. Sometimes my energy tank is empty before reaching the dat’s destination. Other times pain takes me out. Others, still,I get too dizzy to continue. Lucky me, some days it’s a combination of all three. Of course this means that I rarely accomplish what I wanted (or needed) to. It frustrating and depressing and often really destructive. Constantly saying ‘I can’t’ wreaks havoc with every aspect of life. Be it personal or professional, I’m letting people down and it kills me. The guilt is enormous. As is the disappointment. I’m ambitious; my head is crammed with ideas and I had a very different life planned. Not being able to execute my plans in a grand or minute way is heartbreaking. 

That’s the thing about chronic illness, it breaks your heart and you just have to carry on. I’m continually having to find a different way to operate. My lists of can’ts is forever growing and changing, thus I must be flexible. I’m working with a different set of tools and I try to remember that. However, always ticking that box is a daily downer, which happens to be another intrinsic part of being chronically ill. It’s not often that the big things floor me. The huge issues pull all your focus into jus getting through it. It’s an hour by hour what needs to happen to come out the other side of this. There’s no time for dissecting. It’s the drip drip of daily symptoms that really torture me. The dreaded realisation that this thing is here to stay, that’s what fucks me up.

If you like what I do you can support me on Patreon.

Mad Woman…

~ somethinginthewayshemoves

As predicted last week’s level of activity resulted in this week’s inactivity. I’ve been sore and exhausted. Tedious, but expected. The thing that has really been bothering me is my foul mood.

I’m extremely pissed off. Don’t ask me why because I have no idea. No one has done anything egregious. I have experienced no great wrong. Yet, each day I wake up feeling grumpier than the last. My baseline emotion is crabby.

The slightest provocation sends my simmering frustration to bubbling over. I lose a page in a book, spill my tea, forget a detail and I’m furious. My wrath is not solely directed inwards, everyone & everything annoys me. For no reason. I know my feelings are unreasonable. Consequently, it is best for me to be where others are not. I doubt all this seclusion is helpful. Turning all this negativity on myself is unlikely to produce much joy.

I’m at a loss for a solution. I’m accustomed to feeling sad or scared, but this aimless anger is uniquely discomforting. I hope it will pass. Perhaps when I’m less fatigued my mood will lift. Maybe the state of the world is getting to me. Or just life itself. Whatever the cause, I do not love it.

If you like what I do you can support me here or on Patreon.

How I’m feeling now…

~ somethinginthewayshemoves

I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.

Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.

I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.

Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.

Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.

Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.

If you like what a do you can support me here or on Patreon.

My head is spinning…

~ somethinginthewayshemoves

It has been a week. Sometimes this chronic illness business is depressingly predictable. Others it throws you a delightfully new problem. The past week has combined both. Lucky me.

Let’s start with the spoonie admin. Apparently because I have Pots the airline requires proof from a Dr that I am fit to fly. I am fit to fly. I flew last year with no issues. I don’t require oxygen and I can follow the safety instructions should the worst happen. None of which makes any difference to the airline people. This letter has to be signed no more than 30 days before departure. Months ago I made an appointment and explained what it was for. So, imagine my surprise when I turned up at the prearranged time only to be told that their policies have changed; my GP surgery can no longer provide this service. They suggested I contact a private clinic. Since I would dearly like to go on my long awaited holiday, I did just that. After quite a few no can dos, I found a practice who could help. Huge sigh of relief. Right up until they emailed the cost. Oh, what I would give for a body that behaves.

The week then steered into familiar territory. A night of unmanageable pain culminating in a disastrous faint. My glasses were knocked off & one lens shattered in the fall. I of course landed face first in the mess, then proceeded to repeat the passing out & smash my head. Cue a day of blood tests, butterfly stitches and feeling appalling. Oh and obviously more cancelled plans.

I tire of discovering new hurdles and stumbling over the old ones. The week ahead will be mostly conducted from the safety of home. I intend to sit still, get some writing done and try very hard not to be so much trouble. Health is wealth in more ways than one. Bronan is relying on me to keep him in the luxury he is accustomed to.

If you enjoy what I do you can support me here or on Patreon.

Pale September…

~ somethinginthewayshemoves

I just lit the first pumpkin shaped candle of the season. It is rainy, windy and cold. The timing is right.

Today did not bring my favourite autumnal weather. The gloom did, however suit my mood. I had the long awaited appointment with the consultant this week & she had no good news for me. PoTs ✔️ Treatment to improve symptoms ✖️. I can’t take beta blockers & I’m already doing everything that is supposed to help. She also thinks I need to see someone else about the extreme breathlessness. So, it’s status quo with the passing out every two seconds. Oh and back to square one on referrals & tests re breathlessness. I’m very tired and exceptionally fed up. This is what happens when I pin all my hopes on one Dr.

On the bright side I live in Glasgow and it’s nearly October. I am certain I will have many opportunities to wallow in gloomy weather. I also know a very annoying man. No doubt he will frustrate me so much that I will occasionally forgot almost no part of my body works.

Gold pumpkin candle holder on bookcase with picture frames

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