I’ve not done any personal updates in a while & I’ve typically kept posts more neutral, too. Part of the reason is because everything has been rather full-on and I’m finding myself rather overwhelmed. I also don’t want to bring others down with too much negativity. That said, I also think it’s important to be honest and to show the reality of life, especially around how it’s ‘okay to not be okay’.
There’s nothing too exciting in this post. I’m afraid I’ve been too busy to go skydiving & too tired to travel the world!
Mini Me Update Highlights
This mini me update got a little long as I’ve struggled to think clearly so I’ve been adding incrementally to for nearly two weeks. Only read on if you need something to send you off to sleep, you’ve been warned! If you don’t want to snooze, these are the main points summed up:
- We’ve all been Covid-vaccine jabbered.
- I begged & managed to get an IV iron infusion.
- Never-ending migraines are making me super grumpy.
- My neck, shoulders & back are buggered from being propped up in bed since my first 2015 surgery. I might need to find a working body part to sell to pay for ongoing physio.
- My beautiful mama had a birthday. I bought a dog-shaped cake & a dangerous swingball set. We’re waiting on some test results for my mum, so it’s a worrying time.
- We went into the woods. We got lost. No surprises there.
- Trolls & bullies suck.
- Check out the very cool To Better Days range of pain patches.
- I’m feeling ridiculously overwhelmed. I’m sick and tired of being sick and tired.
- My small bowel continues to dance & twist even though I’ve asked it nicely to stop. Go figure.
I’m very pleased to say my parents had their second dose recently, and I’ve also recently had mine. I’m feeling very grateful. My heart hurts for the countries without adequate access to vaccines or healthcare provisions. The events throughout the pandemic are highlighting a lot of inequalities, as well as a lot of unpleasantness within governments. With everything this pandemic has involved, it’s unsurprising that so many have found their stress levels rocket.
In England, lockdown is already changing and evolving, with some things gradually re-opening. I find I’m full of trepidation and worry. There still needs to be caution as we move ahead, and as much as I think tolerance and understanding is needed when we all have our own opinions, I’ll never, ever agree with those who think their own egotistical indulgences are more valuable than the lives of others. With this, I mean comments about how the elderly and sick should just be holed up at home so everyone else can live their lives, or how it doesn’t matter if some ‘weaker’ folks die because that’s just life, and so on.
I’ve ran the gamut of emotions during this past year and a bit, so I won’t get into it much here as the situation is so complex that I’ll end up writing a tome. I’d like to say I have hope and that we can all hold on to a little hope moving forward. This pandemic has to end and hopefully – hopefully – the vaccines are a way through these dark days and back to some semblance of normality without fear and without as much risk to life.
When Begging Pays Off : IV Infusion
After a bit of begging, I’ve finally had my IV iron infusion! I had to push for treatment with my GP practice, despite my ferritin being very low and me being symptomatic, ie. beyond ME/CFS exhausted, incredibly weak, heart palpitations and very out of breath, etc.
The mornings have been particularly frustrating because for countless months I couldn’t get up – this wasn’t just being lazy or tired, I literally couldn’t ‘wake’ up consciously or physically any morning. The house could be on fire and I wouldn’t be aware or capable of doing anything. It was just different to chronic fatigue and it felt all wrong, but I had no idea that could be related to iron, though some is also related to the breathing problems I’ve been having and the squashed lungs. So much time lost.
The original appointment was weeks away so I called to check whether there was a last-minute cancellation I could get into, and thankfully there was. The nurse was lovely & incredibly kind, which makes all the difference. I wish more medical staff were like her.
A few weeks later and I was feeling gradually more conscious in the mornings, hurrah! It’s slow going but I think it’s getting there, though I’ve had so many set backs with other problems, especially back to back migraines, that it’s hard to tell. Breathlessness going down a little. So I think there’s a little improvement, which is nice to have considering everything else is getting worse. The problem will be trying to get more regular infusions because I needed this over 12 months ago when I first started struggling with the symptoms. It’s an uphill battle with everything and it’s exhausting.
In the face of Covid19 delays and doctors reducing the treatments given on the NHS, keep trying. Persevere. Your health is worth fighting for. Sometimes it even pays off. Never give up.
I’m still getting regular migraines, taking out on average 5 days each week. It’s starting to feel rather soul-destroying. Then I get the odd days that are extra bizarre and horrible, though thankfully I often can’t remember too much about them afterwards. On such days I spend the whole day in bed, totally out of it, only moving when throwing up. The last time this happened recently was excruciating being in bed that long because of the nerve damage affecting my back and hips, but there’s nothing I can do about it.
When it gets like that there’s often a part of me that’s still conscious enough to wonder whether I’d make it through and out the other side. I feel guilty for my parents worrying about me, too.
On these ‘extra bad days’, I don’t even have the chance or ability to stress about having got zilch done at the time, but then a day later I realise just how far behind I am. It’s not realistic to have so much to do when living this like. It just causes a continual cycle of overwhelm, stress, regret, guilt and more stress.
Trying to keep up being self-employed earning peanuts despite working my bum off in the small window of time I get each week has been challenging to say the least and I don’t think I can keep going like this. I hate, hate, having to admit that.
But I always find that after a time like this, when things feel even worse than usual, that I get a bit more perspective. It just doesn’t last very long.
We should probably all be a little kinder to ourselves, though it’s easier to give such advice than practice it. Take each moment at a time. Be honest with ourselves about what we can and cannot do. Celebrate the small wins. Realise that just getting through when we think we might not have made it is all we can do sometimes.
Pricey Physio : The Perils Of Years Propped Up In Bed
This isn’t something I’ve really mentioned on here before but for the last 12-24 months I’ve had problems that were hard to describe. I’m not sure I’ll be able to explain it adequately even now that I know what the issue is. I’ve had a sense of heaviness and hollowness under my arms and down the side of my chest, my breathing has been restricted as though my lungs are being pushing up from below and squashed, and my shoulders had been permanently hitched up.
The knock-on effect has been more dramatic, affecting my breathing at night, which affects my sleep and morning migraines and so on. My breathing at night has been incredibly shallow, which I believe is what started leading to the addition of morning migraines as well as vivid, memorable dreams every single damn night since August 2019. That can’t be normal!
Long, long story short. After being told I’d need to wait a few more months to see a physio, and that they don’t do hands on therapy, I got desperate and called a sports physiotherapist and massage clinic in my area. I got in for an appointment two days later.
I was pretty shocked by how I looked in my strappy top in the large physio room mirror. It was the first time I’d really seen myself in a while (without 6 layers on). My shoulders were nearly up to my ears, my collarbone was at a 45 degree angle, the muscles in my neck/shoulders had bunched up and I looked ridiculous. I wish I’d taken a photo as not even I could quite believe it. The only photo I have is a couple of weeks later, where my shoulders have already started to come down but are still popping out a bit.
Extra long story short : My shoulders experience subluxation (partial dislocation) upon lifting my arms. My neck and shoulder joints aren’t correctly supported because of muscles in my neck and mid-upper back becoming too weak. Around 6 years of being bed bound despite moving, just because I can’t sit normally in a regular chair anymore since my first 2015 surgery, has led to some muscles becoming too weak.
As such, different muscles have taken on the work instead (like the tapezius) and pulled the wrong muscles, like those under my ribs, into different positions.
These issues have led to clavicle outlet syndrome, where nerves, veins and muscles are trapped around the clavicle. All these issues are what led to the heaviness and hollowness under my arms and down my chest, my shoulders ‘popping up’ and not being able to sit in place properly, the shoulder and neck instability, problems with my arms and hands, the muscles below my ribs abnormally contracting and crushing my lungs so I can’t breathe deeply.
While I’d hoped for a quick fix, it’s sadly something that will take several weeks or even months to see improvement. He’s recommended heat therapy, so I’ve bought a neck/shoulder wrap that goes in the microwave, along with different exercises at each session to open up the muscles. Then it’ll be exercises to strengthen the correct muscles.
It has been my private physio’s hands-on massage that has resulted in some good improvements – this has helped to ‘unlock’ my shoulders and release some of the muscles knotted at the top, so while such improvement is short-lived, it’s pivotal to being able to get on with re-training the other muscles. According to the hospital’s physio department, an NHS physiotherapist wouldn’t do any hands on physiotherapy massage or muscle manipulation so I would have had to go private anyway. Go figure.
While things seemed to be going in the right direction, albeit painfully slowly, they slipped back down again after too much time being unwell, too much time not looking after myself, missed physio sessions because of bowel twists etc. One step forward, two steps back.
The problem going private is, perhaps quite obviously, the cost. If we could all afford private care, I imagine more would seek it. It’s costing hundreds of pounds already and I’ve got a long way to go. It’s not pretty. All because of the surgery I had in 2015 and the inability to sit in a chair. To think, I had good posture before all of this.
A word of warning to those who also have to live in their bed, work in bed, etc – Keep yourself well propped up, stretch out your shoulders, support your head and arms if you can, elevate your laptop so you’re not always looking down, move as much as possible, keep your shoulders pulled down, work your back muscles. I did the pillow propping and laptop elevation, yet this still happened to me. The simple fact of being in bed rather than in a chair means you’re not working the same muscles, and the knock-on effects can be pretty dramatic. Any signs of a problem like I had, please speak to a doctor.
My Mama’s Birthday
My beautiful, wonderful mama has turned 73 in April! I can’t quite get my head around that number because she doesn’t look her age (I’m biased but I still don’t think she does) and I struggle to grasp where all the years have gone.
It breaks my heart at times that she’s lost over a year now being at home during the pandemic, which is a situation so many have faced and has been in the name of protecting lives. I know there’s time for us to make up for missed coffees and chats in the car while I drive us around, and perhaps the odd day trip. I’ve not thought about these things yet & still won’t because I don’t want to get my hopes up. I still can’t imagine ‘normality’ being around the corner.
Among the gifts I bought, I also got a tennis ball swing set for the garden. That’s right, we’re walking on the wild side now, where danger lies in every swing of the ball as it comes zooming towards your face! It’s surprisingly difficult to actually play – has anyone tried swingball?
I had to take my mum to the GP this morning with a health issue of her own. They’re running tests and we’re waiting for results, so it’s a worrying time. I’m finding it very difficult to think of anything else now. I’m in practical, keep busy mode to stave off the worry.
I drove my folks out for a walk after hunting down a hidden woodland gem (thank you, Google!) This was actually over a month ago now but it was absolutely beautiful and there were very few people walking the trails. Great for Covid safety… bad for when you get lost!
Admittedly it was a bit of a steep incline going up & then we got a wee bit lost, so it was a longer walk than I’d intended! I doubled up on painkillers beforehand and afterwards but it was nowhere near enough; I secretly cried with pain when I got home, but the extra agony was definitely worth it. With illness & pain, we have to weigh up everything we do, and on occasion the payback that can last for days after is worth it.
There’s something very grounding & refreshing about being out in nature. My folks have been shielding since last March so they were glad for another little walk, even if they did go stir crazy with my constant Covid precautions, Dettol wipes & hand sanitizer! I’m sure we’ll all welcome the day where it’s safe to go out & when there’s no stress of making everything ‘Covid secure’.
Trolls & Bullies
I’ll keep this short. I’ve now had two instances of getting harrassed, for lack of a better word, by clearly bored individuals on Twitter. I’d not really experienced trolling before quite like this and I must say, it’s pretty horrible. I’m one of those people that now go “nah, I’m not bothered about this nonsense or what they say”, then spend the day fretting and upset and in tears. There’s a whole other story to tell more locally about being abused but I’ll save that one for another time!
Basically, such instances of trolling made question whether it’s worth it. Should we still speak up for ourselves and stand up for others when bullies might shout us down? Should we still argue for the things we believe in and raise awareness for the things we’re passionate about if trolls might harass us for days on end? Is it worth it?
Yes. I still think that it is. Never let the bullies or trolls or just plain nasty idiots keep you quiet. That’s what they want, because they’re intolerant to the thoughts and views of others. Maybe they also want a fight because they’re bored. Maybe they simply want to bring others down to feel better about themselves.
I was happy in my chronic illness bubble online, where most people have been absolutely incredible. There will always be the odd duck who’s not so nice, but on the whole most people are supportive of each other on blogs and social media. Outside of that bubble it can be vicious, and if you’re feeling vulnerable or not as quick-witted as you used to be (fibro fog, anyone?), then it can feel like you’re caught up in a whirlwind.
Don’t stand for bullies and trolls. And don’t let them keep you down. They’re bored with nothing better to do than make others feel like crap so they can feel superior, which just makes them pathetic. You are far tougher than they’ll ever be.
To Brighter Days
To my surprise, I was featured in a list of chronic illness bloggers by To Better Days! They also very kindly sent a free trial pack of their pain patches so I could try them for myself. I’ve read up on their product and I’ve been very curious as I’d not come across anything quite like these before.
“The unique, patented combination of dextrose and vitamin D work together to soothe discomfort and also treat the damaged nerve, reducing the pain in the affected area over time.”
The To Better Days patches can be used for a variety of conditions and pain types, which makes them more versatile. I have a lot of pain from nerve damage, but I also have fibro pain, joint pain and muscle pain. Having a simple patch that sticks onto your skin, no mess and no fuss, is a convenient option for your pain management toll box.
Such things work differently for everyone so it’s a case of not knowing whether they’ll help until or until you try them. This is why they offer a Trial Pack on the website so you can buy a smaller selection of different size patches and get a feel for whether they work for you.
You can check out their 8 Women Bloggers You Need To Follow post here.
Unfortunately, the woodland outing was one small slice of a single afternoon and that’s been about it as far as uplifting moments go. While I’m doing all I can in other respects, I feel incredibly guilty for not doing more to get my folks out of the house, or to spend time together doing something enjoyable. I’ve felt ridiculously overwhelmed and I realise I’ve not been looking after myself either. Then there are the medical appointments, the legal case, the general junk and everything else. When you keep going that way, you find eventually that something’s got to give. But bloody hell, it’s hard having to admit you can’t manage when you’re only living an already much reduced version of your life anyway.
I’m just finding that the window of time I have in any given day or week is getting smaller and smaller, with health problems sucking away the time and the remainder needing to be for groceries, work etc. I’ve had so many medical appointments that I’ve lost track. Stress and anxiety levels have gone out of the stratosphere and before you know it another year has gone by without you.
If you’re also feeling like this, please know that you’re not alone. It’s hard to make time when you just don’t have it, to admit you’re struggling or to even see any other option other than to keep going as you are. But it’s okay to admit you’re not okay, and you don’t have to go it alone. If you just need someone to talk to, please consider reaching out.
Stoma Shenanigans Update
I’ve had ongoing problems with my insides dancing. This apparently happens because of adhesions after numerous bowel surgeries, so then my insides get stuck together and twisted around. When it twists on itself it can be agony but it’s also dangerous as it obstructs the stoma.
At the start of may I had a week-long small bowel twist that fortunately wasn’t as serious as usual so I’d been able to avoid A&E. Just as well really as I refused to go back after some horrible experiences in December.
I had an in-person appointment in May to see the same colorectal surgeon who did my emergency operation in 2019. It was not what I was expecting, at all.
Because of the ongoing problems, he’s suggested an open procedure like something you’d do in the Operation game, hoping to don’t set off the buzzing alarm : A large cut down the middle of my tummy. He’ll pull the insides out, remove the adhesions, then push everything back in again like a jigsaw puzzle.
I said I’d think about it. Smiled politely. Then bolted.
How’re you all holding up at the moment? Are you finding hopes buoyed with the Covid vaccines or are you still concerned about safety while infections are still prolific?
Please take care of yourselves and have a restful weekend if you can.