Even though I’m the one in pain right now, this is yet another blog post inspired by one of my best-friends Marty from www.gumonmyshoe.com!
I think that it’s more than obvious to say most people will immediately think of physical pain when they hear the word ‘pain.’ I mean, honestly? I do too! If I’m talking to someone and they say they’re in pain, then I wouldn’t even think to ask them whether it’s physical or emotional. And I think that’s just one of the many things I’ve realised more recently with me now having four completely different types of physical pain…
The first to come along was my thumb. On Boxing Day last year (2019) I was opening a bottle of prosecco and using my thumbs to attempt to wiggle the cork loose when the thumb on my right hand just drooped down and I was unable to lift it. I was so confident that I’d either broken it or dislocated it that I went to A&E but upon x-raying it, the Minor Injuries Nurse concluded that it was just a muscle spasm and needed warm water to encourage it to start moving again. Two days later, it was literally impossible to do a ‘thumbs up’ position and I was so overwhelmed with the conviction that something was definitely wrong. So I took myself to a different A&E and was immediately seen by a Plastic Surgeon who told me that the EPL tendon had ruptured and I needed surgery so that I didn’t lose function of the entire thumb!
Unfortunately, the delay in diagnosing it meant that the surgical repair wasn’t successful, and it tore again. The Plastic Surgeon told me that there was literally no point in attempting the same repair and that the only solution now was to either accept I’d lost that movement or have a tendon transfer surgery. The transfer basically meant taking the tendon from my index finger and putting it into my thumb so it was a bigger operation to the first repair and it was going to be a much longer recovery which meant a whole world of pain! And I was already struggling with the pain!
Just as the Surgeon was deciding whether my hand was in as good condition as possible before the surgery, my mental health relapsed when the pharmacy stopped issuing my anti-psychotic medication (you can read more about it here). The lack of that particular medication meant that the hallucinations came back louder and scarier than ever and when – what was deemed by professionals to be – a psychotic belief had me convinced I needed to self-harm, I ended up severing the radial nerve.
Since the county I live in; Northumberland, literally has no Plastic Surgery Team, I was referred to the same hospital that’d been treating my thumb. The Surgeon operated on the nerve, but my mental health continued to decline, and I severed it again. This time, the Surgeons determined that it was irreparable except through a nerve graft surgery where a piece of nerve from somewhere else would be taken to repair the severed one near the wrist and in the base of my right thumb (yes, the thumb with the torn EPL tendon). But since my medication wasn’t fully back in my system, the Surgeon was reluctant to operate whilst there was still a high chance, I might reinjure the area. Initially, this was so infuriating. Firstly, because the relapse hadn’t been my fault. It wasn’t as though I’d stopped taking my medication! Secondly, its kind of made me lose hope to think that the self-harm was likely to continue… And then there was the fact that meant having the pain for even longer.
A nerve graft also held some complications and so the surgeon said that once I had the all-clear to have the surgery, it would be my decision. She explained that firstly, there was a chance it wouldn’t even work. Secondly, it could make things worse by opening it all up. And thirdly, wherever they took the nerve from would go numb. Initially I was of the mindset that ‘why would I want to take a risk that could cause additional pain to the amount I was already struggling to cope with?!’ But then, after talking to people and asking for their thoughts, I began to think ‘how could I not take the chance to do something that has even the smallest chance to make the pain better?’ Fortunately, the surgeon thinks me hand needs another four months of recovery before I need to make the decision.
Experiencing nerve pain, really taught me that even within the umbrella of ‘physical pain’, there’s so many different types! I mean, the pain of my torn tendon was completely different to the pain in the severed nerve. The tendon pain was a sort of sharp throbbing that felt as though it was really deep inside – it wasn’t like banging your knee on something and having the sensation that you could ‘rub it better.’ Nerve pain was a whole different story! It felt like it was really on the surface of the skin and was mostly a dull ache but then every so often I would feel a sort of electric shock down the entirety of my thumb. I also had loss of sensation on the actual skin from the cut to the tip of my thumb. It also meant that sometimes I’d be holding something and suddenly couldn’t feel that my thumb was still gripping it, so I’d drop it.
My third pain is in my shoulder. In September 2020, I had a seizure and had been in a shop holding a shopping basket across my body so when I hit the ground, my shoulder took the entire force. In hospital, an x-ray showed doctors that I’d separated my AC Joint. They explained that it was sort of like a dislocation but that rather than pull it back into place, I had to wear a special sling that would slowly draw the joint back into position. Even the doctors and nurses told me that it’d be so much better if it’d actually been dislocated because once it was popped back in, that’d be pretty much it in terms of being in a lot of pain. Being an AC Joint, however, meant it could take weeks to fully heal!
Then, after another seizure, I properly dislocated it and a Doctor has to pop it back in. Since that, I’ve lost some sensation down my arm but mainly around the top of my shoulder and have seen an Orthopaedic doctor who has deemed me to have damage to the Axillary nerve. To be honest, I did kind of expect that diagnosis, just because the pain and sensation changes were so completely similar to those in my thumb from the radial nerve. But knowing the possible label for a pain is sort of like when people query whether knowing someone is going to die makes their death easier to cope with than if it were a complete shock. And if someone were to ask me, I’d say that maybe suspecting the diagnosis before a professional actually gave me it, made being given it a little less upsetting… I think that’s the case because it meant that the diagnosis was sort of validating. It cemented my own prediction and had the other obvious validation of labelling something to be true.
Since I felt somewhat comforted by having my mental health diagnosis of Borderline Personality Disorder (BPD) explain and be evidence that my ‘symptoms’ existed and that my experiences were genuine and valid; I guess it’s no surprise that I’d find that same feeling with physical ailments. Another benefit I experienced to having a diagnosis with both mental and physical pains, has been that it allows you better access to services and professionals who can help and support you with whatever the diagnosis is. Before I got my BPD diagnosis, professionals were so unsure how to help me and they often made decisions that probably hindered my recovery and which they would have changed had I had the diagnosis at the time. Obviously, each diagnosis has its own recommended treatment so until you know which illness it is, people are kind of just stumbling around in the dark grabbing at things which have even the smallest chances of helping. Desperate to improve things for you.
I also feel that having BPD has meant a lot of medical professionals are sceptical in trusting my statements and believing what I’m telling them I’m experiencing is true. And I’m sure this is the case for a lot of people with mental illnesses who feel that their mental health has led to doctors and nurses questioning the reliability of what you’re saying is going on for your physical health. But, I do wonder if there’s a difference with this in terms of what your mental health diagnosis is; it’s no secret that there’s a whole lot of stigma surrounding BPD – even within mental health services – and that definitely affects the care myself and others with the diagnosis receive. One of the most common thought processes behind the stigma is labelling people with BPD as attention-seeking with a general disbelief in their ‘symptoms.’ Experiencing people with this attitude around my mental health, has meant I’m that bit more grateful and appreciative of doctors and nurses taking my physical health problems seriously.
The pain with my shoulder is a bit more complicated than the radial nerve and EPL tendon because there’s so many different injuries in the one spot and each has a different type of pain. I mean, when you dislocate your shoulder you can damage the bones, the joint, the muscles… and then I had the nerve damage there too with the Axillary nerve. The bone-y pain is like a much harsher, sharper pain that you get when you bang your shin. The muscular pain feels as though it’s much deeper and is more of an ache… But all of these pains in the one shoulder and the fact they were caused by a dislocation has meant that I have another sensation too… The physiotherapist labelled it as ‘apprehension’ and it’s basically the feeling that if you move your shoulder in a particular way, it’ll come back out of position. The physiotherapist told me that one movement you really shouldn’t do after a dislocation is wave!
And that, is something which is triggering of a very similar experience around my tendon and nerve damage with my hand/thumb; my movement is restricted. Obviously, it’s in very different respects with it being different parts of my body; for my shoulder it’s about the general movement of my arm, but with my thumb it’s about absolutely any use of my hand! It kind of makes it sound like my entire right arm is pretty useless and to be honest, on a bad pain day; it really is! So, the movement I’m most bothered about losing has been the ability to stay on a computer typing for hours at a time. Obviously, being a Blogger, means I spend a lot of time on technology and before these injuries, I could probably sit for 8 to 9 hours. Now? It’s more like 2 or 3 before I need to rest my arm/hand! And anyone who knows me will know how important my blog is for me and being unable to work on it as much as I want to, is really hard to cope with. The thought of not blogging makes me feel quite lost and alone and I honestly don’t know who I am without I’m NOT Disordered, so obviously I’m going to do all that I can to maintain my blog and continue being able to work on it – especially with Blogmas coming up!
So, the fourth and final physical pain I’m currently battling is a bruised Spleen! Huge variety of ailments is there?! So, this one, happened from another seizure but on some stairs. Apparently, there was about twelve stairs and I fell from top to bottom. When I woke up my tummy was in absolute agony and I was so scared because whilst I’ve had tummy pains before, it’s never been the same as what I was in then. I couldn’t find reassurance in any previous memories in terms of being able to say; ‘I’ve felt like this before and been ok!’ I was just left panicking and it really helped that even though the staff of the hospital I was in when I fell down the stairs, were concerned and worried, they didn’t panic! They gave me painkillers and then, because I was still in pain, my blood pressure kept falling and they were only for minor injuries, I was transferred by ambulance to the bigger hospital.
When I saw the Doctor there, I was still in pain but it wasn’t too bad and there was hardly any bruising on my tummy so he said that rather than put me through so much radiation to have a CT scan, he would do a quick ultrasound to check for internal bleeding. And the ultrasound was fine but he added that firstly, I would end up in more pain the next day, and secondly, if bruising came out or the pain got worse then I should go back in for a CT scan. I was so grateful he told me the pain could be worse because the following day – when I honestly felt like I’d been hit by a bus(!) – I was in so much pain that if I hadn’t known it was normal, I would’ve been straight back to A&E! But that reassurance only lasted that one day… and when bruising came out and continued to get worse over the following six days, and the pain became unbearable, I was so scared that I took myself to A&E. I explained that I’d been comforted the day after it’d happened but that I’ve never had an injury like this, so I really didn’t know whether what was still going on was still normal and expected.
The entire situation reminded me a lot of my mental health and when it first became poorly because all I knew about hallucinations was that someone experiencing them needed to be in hospital and I imagined they’d never be let out! So, when I started hearing voices, I was absolutely terrified and was so reluctant to tell anyone out of fear of what would happen if I did. Having very little understanding of what was going on – I didn’t know there could be chemical imbalances in your brain to cause hallucinations, or that trauma could contribute to them – was hard for me because I’m definitely someone who likes to have a clear understanding of things… I mean, even when I’ve had to take my pets to the Vets(!) and the Vet will use jargon, I always ask what is meant by the very long – mostly Latin – words because it’s something which is so unfamiliar yet it feels really important that I understand it!
Having all these pains, I’m obviously on painkillers and it might sound strange because who wouldn’t want to take something to get rid of pain? But, it’s been hard to take them all because it’s been drilled into me the danger of becoming addicted to what I’m on and whilst it’s obviously important that I’m aware of that possibility, it’s kind of scared me into being reluctant to take them. It’s basically meant that I don’t religiously take them every four hours – just when I need them (with at least four hours in between obviously!). And I do really appreciate being prescribed pain relief, for two reasons: the first, is that it really shows to me that the Doctors are taking my pain seriously and believe me when I tell them how bad it is. And secondly, it’s meant that they trust me to have so much medication in my home. I mean, I’ve always said that I would never overdose on my own medication because I know I probably wouldn’t’ be given it again. Feeling believed and trusted is so validating and that’s something that I rarely experienced with my mental health…
So that’s my physical pain. I’d honestly say that I’m not in any emotional pain right now but there’s two different ones that I recognize I’ve experienced. The first, has been the pain of memories. Memories of the abuse, of my time in psychiatric hospitals, of the suicide attempts, the self-harm… I think that having painful memories isn’t something that is solely for someone with a mental illness because people without a diagnosis can also struggle with this. Knowing that, makes it a little ‘easier’ to explain how it feels because I’m fairly reassured that there’s a lot of readers who already know!
I remember the first time that the memories of the abuse were so powerful and overwhelmingly painful that I just collapsed on the floor, crying. Sort of fortunately, I was a psychiatric inpatient so I was surrounded by help and support; I don’t know how I would have coped if I’d been in the community and left to my own devices. I definitely don’t think I would have been safe. Actually, I don’t know that it would have happened because the memories were triggered by a song coming on the radio and if I’d been at home, I would have the control to avoid ever hearing that song… and it wasn’t that the song had been playing whilst I was abused or that it’d been released then; it was more to do with me being able to relate to the lyrics and find them an actual descriptor of my abuser. So, when I heard those lyrics; it felt as though I was back in that office where he hurt me. I was on the ceiling and watching it all happen to some poor girl who I felt as though I recognized but I couldn’t accept that it was actually me. Having my vision totally blocked by the memories meant that when I fell to the floor in real life, I didn’t even realise I had fallen until my knees hit the floor! And whilst my ears felt overwhelmed by all the things my abuser said to me whilst he hurt me, I couldn’t hear myself crying until the tears were rolling down my face. And when I finally landed back in reality; crying on the floor with the psychiatric staff all around me, I felt a crushing pain in my heart and it was so sore that I remember putting my hand to my chest as though I had the feeling that I could rub it better. But I couldn’t. The pain was so deep inside of me that I was convinced it was literally coursing through my veins, travelling through my entire body. Everything hurt.
The second emotional pain I’ve experienced in the past has been with the auditory hallucinations. It has taken me a long time to recognize that those suicide attempts weren’t really about me wanting to be dead; they were about being in so much pain that I believed death was the only escape. And that pain came from the memories and the voices. When I first started experiencing auditory hallucinations in 2009, I spent ten days putting all my energy into ignoring their insults and their commands to kill myself, before I really did attempt suicide.
And
why did I end up overdosing? Because the pain agony of fighting them was
too much. For such a long time, the voices left me feeling as though I didn’t
own my head. That it wasn’t really mine, because I had to fight for room and
petition to even just be heard. And that was painful. Exhausting, and painful. When
I’m the sole occupier of my head (it happened occasionally!), I don’t want to
be dead. I honestly believe that if it weren’t for the voices, I would’ve been
able to cope with the memories in a much healthier and safer way and I probably
would have never attempted suicide…
The thing about pain, though, is that experiencing it can almost break you or build you. Being in pain can obviously leave you feeling really sad and often lonely when you find yourself believing that no one else can really identify with you or really appreciate what you’re experiencing. But you can also use pain to grow and learn from – even physical pain! It might mean learning to take medication or to avoid certain things, but it could also mean learning healthier ways to cope and safer mechanisms to see you through a painful time.