Finding HopeMy Experience With A TENS Machine
Posted on July 22, 2023
So, for those of you who don’t know, a TENS (Transcutaneous Electrical Nerve Stimulation) machine is a little gadget that you can use for pain relief. You attach little electrodes to your skin around the area where you have pain and although no one seems to know quite how it works – whether it blocks pain signals before they can reach your brain, whether they stimulate the production of endorphins, both, or something else entirely – the pain, in my experience at least, instantly starts to dissipate. As a chronic pain sufferer, I wish I’d known about this earlier so I thought I’d share my experience in case it’s useful to someone else, someone else who’s in pain.
A while ago, I seriously messed up my back. I don’t know what happened exactly, to be honest: I was sitting on the ground, playing with a neighbour’s puppies and I was getting a little stiff without anything to support my back but everything was basically fine. Then I tried to get up and the pain in my back was so bad that I was momentarily paralysed; it was so painful that I couldn’t think, couldn’t remember how to move even if I wanted to. When the shock of it wore off, I figured that sitting without any support had just resulted in more pain than usual but with some painkillers and time on my heat pad, I’d be fine. But several hours later, I still thought I would scream or throw up or collapse if I so much as twisted slightly. It was hideous.
After several days – and several moments of spasm-like pain that had me sobbing on the floor, unable to move – there was still no improvement. I was taking the strongest over-the-counter painkillers, as well as alternating hot and cold, but none of it was helping beyond the odd moment of relief. My sleep was also terrible because the pain woke me up every time I tried to turn over. I’d decided to give it the weekend before going to the doctor between encouragement from both my Mum and my therapist, I ended up going as soon as we could get an appointment. The doctor was convinced of my pain immediately, give the way I hobbled into the room. He was great, prescribing medication for a few weeks before reassessing; the strongest he could give me was Co-codamol and Diclofenac with Omeprazole to protect my stomach (his first instinct had been Tramadol but that would’ve interacted with my antidepressant, Phenelzine, which I’d predicted before he’d even thought of it – Phenelzine can be a real pain sometimes) and wanted me to come back if I was still struggling in a few weeks. The thought nearly made me cry; my history with medication isn’t good and I wasn’t feeling any more optimistic about this combination. But I agreed to do it: it was the best I was going to get and I had things that I needed and desperately wanted to do.
As I’d predicted, they didn’t really work. I had a little relief around the peak of their effectiveness but most of the time, I was still in so much pain that I could barely move: whimpering, crying, nauseous… I had to keep my movement extremely limited but between the painkillers and a back brace that I bought out of desperation, I started to do a few things again, things I was desperate to do and things that couldn’t be rescheduled; it wasn’t the most comfortable thing ever but the support did allow me to do a bit more and live a life not confined to the sofa, plus I could finally take a deep breath again (sneezing was fucking awful, I kid you not).
So even though I had a couple of coping mechanisms, I was still in a lot of pain – too much pain. I could barely do anything. But then I spoke to a physiotherapist we know and she suggested a TENS machine. That was when everything changed, about three weeks after the pain started. We attached it to my back, turned it on, and once I got the settings right, the pain seemed to shift, like it was breaking up in my muscles. I almost fell over with sheer relief. And after having it on for a while, the pain was gone: I went from barely able to move to walking around and managing a limited number of events. And I wasn’t constantly exhausted – or in tears all the time – from being in pain. It wasn’t perfect though and the pain returned when I wasn’t attached to it but it did grant me periods of significant relief and for that, I am definitely grateful. The sensations from the different modes – mine has eight and then you can adjust the intensity – can be really weird and not always comfortable and, in my experience at least, the electrodes need replacing more often than I’d like (when in constant pain, you do find yourself going through them quickly and that can get expensive), plus mine is a bit flimsy (one of the electrode wires broke this morning but fortunately it was the part that you replace anyway, not the permanent part). Having said that, it’s been fantastic for relieving my pain and, given how often I struggle with chronic pain, it will definitely become a staple in my toolbox. Although when it needs replacing, I think I’ll get a more upmarket one now that I know how effective it is.
About six weeks after the pain began, with the help of the TENS machine and sporadic use of painkillers, I’m basically functional again although I do struggle after a long day or standing or walking (by my standards at least) – I attach it to my back or various points on my legs and I recover so much faster than I did before; it’s definitely still coming in handy. But rather than using it multiple times a day, I’m only using it every few days so whatever happened is definitely healing and I should be back to normal soon. I’ve even managed to start some gentle hydrotherapy; I had to be careful not to overexert myself and it had been a pretty long time since I’d been in the pool so I was a bit stiff and sore afterwards but painkillers and the TENS machine had it completely covered. So I’m not sure that this will be a problem much longer, which will be a huge, huge relief.
So while it does have it’s disadvantages, I’m definitely a fan. It’s a pretty simple system, it’s versatile, and it’s very effective. As I said, it will be a constant presence in my pain management toolbox from now on.
So, there is the story of my latest chronic pain episode and the TENS machine that rescued me. Hopefully, this will give you a glimpse into what using one for pain is like and whether it’s something that might be helpful to you – although, as always, consult a professional first because there are some conditions that react badly to its effects – please always make sure you’re safe.
The Resurgence of My Body-Focussed Repetitive Behaviours
Posted on July 15, 2023
TW: Mentions of Trichotillomania, Dermatillomania, and self harm.
Over the last twenty months – the period dominated by my latest depressive episode – my hair pulling has been much less of a problem, something that tends to happen when I’m really depressed; it’s like I’m too depressed to pull. I guess that’s something to be grateful for while incredibly depressed (scraping the barrel but it’s something, or at least not nothing). But, over the last few months, my hair pulling (and other BFRBs) have returned with pretty frightening force.
As I said, it’s been a long time since I’ve been seriously pulling at my hair. But in the last couple of months, the urge has come roaring back with relentless intensity. Whether this is connected to starting the Phenelzine again, to beginning the escape from The Great Depression, or something else altogether, I have no idea but it’s a frustrating and exhausting to be back here again, back to pulling so much and so often that I have constant pain in my shoulder and arm. It hit me a while back that it will, in a couple of months, be ten years since I started pulling, which has been a pretty overwhelming realisation – I never thought it would become such a permanent part of my life.
I also started picking at my skin, which isn’t something I’ve ever really done and certainly not to the degree that I pull my hair. Frustrated by the imperfections of my fingertips, I ended up compulsively chewing on the callouses that had recently developed on my left hand (coming out of the depression, I’d started playing the guitar again and the callouses on my left hand – my string hand – had begun to reform); it got so bad and I’d gone through so many layers of skin that I couldn’t touch anything without pain. How they healed, I have no idea. I was also picking at my nails and the skin around them. My fingers were a mess, raw and painful and I ended up going through multiple packs of plasters in my attempts to stop. But, of course, I’d start picking at them as soon as I took the plasters off so they really did take ages to recover, and it was even longer before I could play guitar again.
And as if both of those behaviours weren’t enough, I was compulsively scratching at a half healed self harm cut on my face. It had started to heal but then suddenly I couldn’t leave the scab alone, reopening the cut and eventually making it bigger and bigger. I wasn’t trying to stop it from healing exactly but in my mind, the uneven, ‘imperfect’ edges needed to be fixed and so I kept trying to smooth them out, make them neater, make them symmetrical, or… something. It’s completely illogical because I was just making it bigger – just making the wound worse (and at this point, it really was a wound) – and more likely to get infected but I couldn’t help it.
I just could not stop myself. I tried so hard – trying every strategy I’ve ever used, every one I could find on the internet – but I still felt like I was losing my mind – and I mean that literally – if I didn’t do it, a feeling that got worse the longer I tried to stop myself. In the end, I always broke and my fingers found their way back to whichever of the three was their favourite at that moment in time. And it was always worse if I was extra tired or extra stressed. The only way to in way curb it – the behaviour if not the compulsion – was to cover the skin I was attacking, plasters over my fingers and a dressing across my face (that one was harder and less comfortable to explain). That didn’t stop me trying, constantly fiddling with the edges of them, and my hair bore the brunt of that coping mechanism. I ended up buying a hat that I could tuck all of my hair under but even with all of that in place, the urge to pull or pick got so bad sometimes that I simply gave in to it. Sometimes it was just too hard.
(On the left: before we found the correct dressing // On the right: in the early days when I’d only chewed on two callouses)
Jump to a few months later. My callouses finally healed and, after a period of using the wrong type of dressing before switching to a better one, my face recovered for the most part too although there’s still a scar. With those ‘imperfections’ ‘perfect’ again, hair pulling has become the main problem again. The urges are less than they were but still pretty relentless – perhaps a side effect of restarting the Phenelzine after all? – and I’m so fucking tired of the whole thing. I don’t know what to do, how to stop; I’ve seen so many people say that it’s not actually possible. But I don’t want to live like this. As I said, I don’t know what I’m going to do but I think I might try hypnotherapy; I’ve heard that some people have had positive results. So I guess we’ll see. Ten years is long enough.
Everyday Essentials
Posted on July 1, 2023
Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?
GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.
MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!
PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.
LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.
MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.
MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.
FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.
NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.
FACE MASK AND HAND SANITISER – I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.
A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.
JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.
POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).
LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective. This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.
CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.
So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!
Finding Hope 