Finding HopeA Fibromyalgia Diagnosis Was Not On My 2023 Bingo Card…
Posted on September 9, 2023
I’ve been trying to write this post for a couple of weeks now but I’ve been finding it difficult to accurately describe my feelings about the whole experience. To cut a long story short, I have been diagnosed with Fibromyalgia (on top of the Hypermobile Ehlers-Danlos Syndrome and Chronic Fatigue Syndrome) but, given my traumatic history with doctors and the medical system, it’s left me feeling shaken up and vulnerable…
Several weeks ago, I went to the hospital for an appointment with the Rheumatology Department. It was my annual follow up, post my diagnosis and then confirmation of Hypermobile Ehlers-Danlos Syndrome, despite it being a different hospital, a different doctor, and having had no support for it since the diagnosis. I was, let’s say, perplexed by the purpose of the appointment, given the lack of contact with them but apparently the appointment was important to insure that I wasn’t discharged from the system; I’m not entirely sure how being in the system is helpful (given the lack of contact and support) but I wearily (and warily – I’ve had so many traumatic experiences at the hands of medical professional that just walking through the door can trigger a panic attack or a meltdown) agreed to go.
I’m not sure the doctor knew exactly what the purpose of the appointment was either because he meandered through a series of questions without an apparent destination. But when he asked about pain and I described the ebb and flow of the chronic pain I live with day-to-day, he started talking about Fibromyalgia, whether I’d heard of it, and whether I’d ever been assessed for it. I told him that I had been and wasn’t found to have it, a snarky comment – “I thought doctors didn’t believe in Fibromyalgia” – slipping out. Over the last decade or so, my apprehension (read: trauma response and resulting severe anxiety) in medical situations tends to manifest either as becoming non-verbal or triggers a snarky, provocative attitude (depending, I think, on whether I’m more upset or angry – what determines that, I’m not really sure). That day, apparently, the snark was winning out. I don’t particularly like this about myself but the emotions are always so overwhelming that I feel about as in control of it as I do the non-verbal periods – as in, not at all. My therapist and I are talking about it but sixteen years of traumatic experiences aren’t going to be solved in a handful of sessions. Fortunately the doctor didn’t seem offended.
He asked me to fill out a couple of questionnaires and I scored ridiculously high on both of them, indicating Fibromyalgia. He asked me a few more questions and then had me lie on the gurney, pressing on the Fibromyalgia Tender Points and rotating various joints. To his credit, he told me exactly what he was going to do before he did it – with the explicit option to say no – and he was as careful and gentle as was probably possible while still learning was he needed to. Usually an appointment that involves a medical professional touching me ends in emotional disaster (panic attacks, meltdowns, etc) and while there’s no world in which I could describe myself as relaxed during the exam, it didn’t end in tears, literally or figuratively. He also carefully examined my hands, given how much pain I have in them. He couldn’t find anything specific but acknowledged that that didn’t mean there wasn’t a problem and said he’d arrange an ultrasound to be sure. That surprised me; in my experience, most doctors stop at not finding a problem. I don’t think I’ve ever had a doctor run tests ‘to be sure.’
He diagnosed me with Fibromyalgia (my thoughts on that in a moment) and ran through the (limited) available options. He listed various medications to manage the pain, none of which I can take due to previous bad reactions or because they’re contraindicated with my anti-depressants; he said he’d look into some funding for more hydrotherapy since the NHS only gives you maximum two, although I’d be very surprised if he managed that; and he said he’d refer me to an inpatient centre that specifically takes people with hEDS (but just the thought of the inpatient format makes me very anxious, unsurprising as an autistic person who finds change difficult to say the least). So I don’t feel particularly convinced by any of that but I have to give him credit for trying; I don’t usually get even that.
So, according to at least five different doctors, I have Chronic Fatigue Syndrome, Chronic Pain, Hypermobile Ehlers-Danlos Syndrome, and now Fibromyalgia. These conditions can and do exist together but I remain unconvinced that I have all of these conditions when so many of the same symptoms occur in all or multiple conditions, such as pain (in both joints and muscle), muscle stiffness and/or weakness, severe fatigue, difficulty sleeping, difficulty with concentration and memory, headaches, heart rate irregularities, dizziness, and low mood. I feel reasonably sure about the hEDS – given the joint hypermobility and instability, as well as the autonomic dysfunction, the postural tachycardia (and the connection with neurodiversity makes for an even stronger case) – and I definitely struggle with something or some things that involve severe pain and severe fatigue, but I don’t know how to be sure which diagnosis or diagnoses those fall under. In an ideal world, I’d be able to trust these doctors and the diagnoses they bestow upon me, even if the number of them and the overlap of symptoms feels unlikely (to my admittedly untrained eye). But my experience and the trauma I live with as a result of how medical professionals have treated me, reinforced by the all but unanimous lack of support, has left me unable to trust them and trust them with something as precious and fragile as my health, physical and mental. So I find it very, very hard to take any of them at their word and then to believe that they’ll do what they say they’ll do; I’ve long stopped having expectations.
Even though I remain skeptical about the Fibromyalgia diagnosis and the options I’ve been presented with, I was reassured a little when the doctor asked if I’d mind having a series of blood tests done (including ones for thyroid function, liver function, and cortisol) and more so when he was happy to include a couple more – ones relating to my ADHD – that I’d been waiting to ask my GP about; I was more than a little taken aback that he was listening and willing to help, even though it wasn’t a part of his job. I was surprised again when he rang to check whether there were any problems because he was still waiting on the results (I’d had to postpone the tests when I was felled by an ear infection); that’s a diligence I’ve seen so rarely that I could probably count the occasions on one hand. So I am grateful for that, even though I find it unsettling, even though the whole thing was very stressful.
A new diagnosis (and yet more time in medical establishments with medical professionals) isn’t a road I wanted to go down and the confusion and internal conflict over how Fibromyalgia fits into the picture (especially since I’ve been told in the past that I don’t have it, making the whole thing even more confusing) have been really draining; my anxiety has been running high, especially around medical stuff (which made going to the doctor for the aforementioned ear infection a difficult and distressing experience). I’ve been talking to my therapist a lot about these experiences (more on this in a separate post, I think) but, given how long this traumatic cycle has been going on, it’s not something that I can simply deep breathe my way through. No, it’s going to take rather more than that, I think.
World Cat Day 2023 – The Benefits of Cats
Posted on August 8, 2023
Happy World Cat Day! I am both deeply a cat person and a dog person, even though I don’t have a dog right now, and my cats are one of the great loves of my life so, for World Cat Day, I thought I’d research and share why cats are so incredibly good for us. But before I get started with that, I wanted to share my favourite fact: we know that our relationship with cats goes back thousands of years but some research shows that cats essentially domesticated themselves in South Asia, befriending humans for a ‘mutually beneficial relationship’ (although, let’s face it, it probably started out as an easy way of getting food). (x) And clearly, we’ve always been obsessed with them: in 889 CE (also known as AD), twenty-two year old Japanese Emperor Uda described his new cat with familiar passion: “the colour of the fur is peerless,” “when it stands, its cry expresses profound loneliness, like a black dragon floating above the clouds,” and “I am convinced it is superior to all other cats.” (x) Who of us cat owners have not described our cats in similar ways and with similar pride?
IN THERAPY
- According to the Human Animal Bond Research Institute (HABRI), pet therapy sessions have proven to decrease isolation and loneliness, increase social functioning, and improve independence in autistic individuals.
- Cats are being used in animal-supported therapy more and more, commonly used to treat anxiety disorders, depression and Post Traumatic Stress Disorder (PTSD), as well as Attention Deficit Hyperactivity Disorder (ADHD) in children as they often help to keep them calm and focussed.
- Cats (and animals in general) act as a good ice-breaker, both at the beginning of the session or if the session becomes difficult and the patient needs a moment to breathe; they serve as a positive, calming topic of conversation, a good release valve, before getting back to work.
- Cats are a reassuring presence, good for reducing anxiety.
EFFECTS ON THE BRAIN
- A positive bond with your pet can increase your dopamine, serotonin, and oxytocin levels, the hormones known as the ‘happiness hormones.’
- Researchers have discovered that the human brain releases endorphins when stroking a cat and when listening to a cat purring, lowering our stress levels.
- The brain also responds to a cat’s purring by releasing serotonin.
- Playing with your cat can raise your levels of serotonin and dopamine, relaxing the nervous system, and the ‘happiness hormones’ are stimulated when we smile or laugh or talk to our cat.
- Studies show that the bond between a person and their pet is linked to several mental health benefits, including reduced feelings of loneliness, reduced anxiety, and reduce symptoms of PTSD.
- According to HABRI, 74% of pet owners say that owning a pet has improved their mental health. Studies have shown that the bond between human and animal increases oxytocin levels in the brain, resulting in feelings of calm and focus.
- Research by the Mental Health Foundation and Cats Protection, in a study of over 600 cat owners, found that 87% felt that having a cat had a ‘positive impact’ on their wellbeing and 76% reported that they felt they could cope better with their lives because of the presence and relationship with their cat.
- It has been reported that people with pets experience less anxiety than those without. Studies have also shown that cats are beneficial in reducing anxiety, especially in certain groups such as students and autistic children.
- Spending even twenty to thirty minutes with a pet can trigger chemical changes in the body that reduce stress, including the increase of serotonin and dopamine levels in the brain and reducing anxiety.
EFFECT ON EMOTIONS
- Our pets love us unconditionally which is very comforting when we’re struggling or feeling lonely.
- Animals are so present that they encourage us to do the same, to be present and mindful.
- Researchers in 2008 found that 44% of cat owners felt ‘a sense of safety’ when with their cats.
- Caring for someone or something other than ourselves, that relies on us, can create a sense of accomplishment, fulfilment, and confidence. And the more confidence we have in ourselves, the better we tend to feel about ourselves.
- Polish researcher Elzbieta Budzinska-Wrzesien and her colleagues concluded that when you have a close relationship with your pet – who shows you unconditional affection and doesn’t judge you – that relationship can boost your sense of wellbeing and self esteem. This bond can relieve stress, increase social interaction, and create healthy habits.
- The love of and for a pet can often motivate a depressed person to keep going because they know they have their pet relying on them.
EFFECTS ON THE BODY
- Studies have shown that the bond between a person and their pet can result in many health benefits, including decreased blood pressure and cholesterol levels.
- Multiple studies show that cats have a calming effect on us, reducing our stress to the point that we are approximately 30% (different studies show slightly different numbers) less likely to experience heart disease. Even watching videos of cats of have shown to reduce our stress.
- Another study showed that cat owners have fewer strokes than non-cat owners.
- Stroking and cuddling your cat can reduce the cortisol, the stress hormone, in your body, which leads to decreased heart rate, blood pressure, and anxiety.
- Some studies have shown that having your cat close by at night results in better sleep. Cat-owners who let their cat sleep on their bed or in their bedroom said they found it easier to both fall asleep and stay asleep. Compared to dog owners and those without pets, cat owners specifically indicated waking up fewer times during the night, as well as less restlessness and fatigue.
- A cat purring has therapeutic effects both on them and on us. Studies show that purring falls between 25 – 240Hz, the frequency known to speed up the healing of injuries, including broken bones, damaged tendons, and injured joints. Some people have even reported the purring of their cat easing their migraines too.
EFFECTS ON LIFESTYLE
- Looking after a pet requires the ability to create and stick to a routine, time management skills, organisation, and multitasking. These skills are difficult for many people, especially individuals with ADHD, so caring for a pet can aid in building and strengthening these skills, motivated by the knowledge that your pet needs your care and attention; tasks involving them can’t be procrastinated or skipped. Over time, these skills can be harnessed for non-pet related tasks.
- Caring for a pet can also help to build a better sense of self-esteem and can improve how pet-owners, especially those with ADHD, feel about themselves in a neurotypical society.
- ADHD pet owners have reported feeling great pride in managing to take care of their pets, especially on their own. Sometimes it’s the first time they’ve managed to build and keep a daily schedule. This builds confidence, which goes on to affect other areas of their lives. Some reported that getting a pet is what forced them to learn and improve these skills, which resulted in them taking better care of themselves as well.
I found an excellent story during my research…
“I have a cat and I couldn’t manage without him. Yes, he provides comfort and unconditional love, but he also keeps me on track. I used to work with chimps and sign language, so when I got a kitten, I placed a very high priority on his communication skills and on shaping gestures he used naturally. I also used food puzzles and other things to keep his mind active. He knows what time I need to be up for work in the morning. Unless I tell him the night before that we can sleep in, he pokes me awake 3 or 4 minutes before the alarm. If I space out cuddling with him, he gives me a minute or so, and then he stands up and uses his limited gestures to say firmly, ‘You. GO,’ and waits to make sure I’m up before he leaves the room. He knows how long it takes me to wash and dress. If I dawdle too long deciding what to wear, he’s in the doorway checking to see what’s taking so long. If I leave something in the oven and forget about it, or leave a burner on after I’ve taken a pot off it, he lets me know. Sometimes I assume he’s just looking for attention and scold him for making a ruckus when I’m trying to focus, but if it’s a safety issue, he won’t stop until I give up and say, ‘FINE! SHOW me what’s wrong,’ and then he leads me to the stove, or wherever the issue is. He’s most certainly the grown-up in the relationship.” (x)
MY CATS
If you’ve followed this blog for a while, you’ll know that I have five cats, all related to each other. Lucy came first and then we kept her second litter of kittens, Tiger and Mouse, and then – to even the vet’s surprise – Mouse suddenly had two kittens, Sooty and Sweep, that – for a number of reasons, including the pandemic – we ended up keeping. I love them all dearly and it’s sweet how, not only have they all developed different relationships with each other, they’ve developed different relationships with me.
Lucy is my anchor. She’s always there, curled up next to me or snoozing somewhere in the same room. She doesn’t want to be cuddled all of the time but she always wants to be nearby; she likes to know what’s happening and what I’m doing. It’s very sweet. And she probably looks after me more than I look after her: she regularly checks in with me, she follows me around, she gets anxious if she can’t be in a room with me, she’s always really pleased to see me when I reappear from behind the shower curtain, she tries to usher me to bed when it gets really late and then sits with me to make sure I don’t get up again, and so on. It’s adorable. She’s the queen of the house though and she absolutely knows it.
Tiger is my snuggle buddy. Up until recently, she’d come for a cuddle now and then but she was usually too busy exploring the garden or playing with the other cats (plus she does have a favourite spot for snoozing). But after I went to the US and then Germany, it’s almost like she realised that she really doesn’t like it when I go away – I think all five cats got very comfortable with my Mum and I being home all the time since the pandemic began. As soon as I got home, she was all over me and ever since, she’s been coming to me for long cuddle sessions multiple times a day. It’s very cute, especially given how independent she was before. I’m certainly not turning her down, even if her tail is a weapon of mass disruption.
Mouse and Sweep are my floofs. Sweep has always been Mouse’s baby and they are definitely a bonded pair, which is a gorgeous thing to witness: they are curled up together all the time and even in the summer heat, they lie as close together as possible without touching (although Sweep often reaches out with her paw to touch Mouse, like she’s reassuring herself that she’s still there). Sweep frequently runs to Mouse for reassurance after something traumatic happens (the most traumatic thing to ever happen to her is the unexpected appearance of the window cleaner’s brush) or runs into the room, calling for her. It’s so cute how much she loves. She’ll rush up to Mouse and flop down on top of her, getting as close as possible, something that I’m not sure Mouse always appreciates. Mouse has always been the most skittish of the pride but she’s getting more affectionate and playful as she gets older, which is lovely. And we’ve started trying to teach them all tricks, mainly for our own entertainment, and Mouse has definitely been the fastest to pick them up. And Sweep is the complete opposite. I’ve started referring to her as ‘my little neurodivergent baby.’ I don’t know if there’s any proof that neurodiversity exists in any species other than humans but it seems unlikely that it’s just us; I wouldn’t be surprised if it’s only so obvious in humans because neurodivergent individuals are forced to live in a neurotypical society, something that animals don’t seem to have, certainly not in the same way. If those pressures aren’t there, then maybe neurodivergence doesn’t manifest in the same way. Anyway. I think of Sweep as neurodivergent because she seems to think and process completely differently to the other four, like they think in words and she thinks in pictures – or the cat equivalent. She still struggles with the cat flap, she doesn’t seem to understand how doing tricks works at all, she likes to hide away from everyone but has her special bond with Mouse, she seems to experience a lot more anxiety than the rest of them… I don’t know. She’s just very different to the others, not that we love her any less.
Sooty is my baby. She’s always seemed to think of me as her mother, even when she was a teeny tiny kitten. I wonder if that’s because Sweep and Mouse are always so entangled but whatever the reason, it’s adorable and I’m not turning down her affections. She always wants to sit on the sofa with me, demanding that I stretch out my legs so that she can stretch out between them; it’s her favourite spot. She’s also very playful and she and Lucy are a particularly playful pair, although she’ll play with anyone who will engage with her. She still feels very much a baby, Sweep too, even though they’re four now (which seems unbelievable to me but then I guess the pandemic really screwed with our perception of time) and that’s very sweet. I kind of hope she always will; I think she’ll probably always be my baby (although, to a degree, they’re all my babies).
APRIDEOFCATS
To avoid overwhelming people with cat pictures on my Instagram, which is focussed on me as a singersongwriter, I created a new account, aprideofcats, so that I could post as many as I wanted. It’s as much as for my own entertainment as anything else. I stopped using it for a while – when I was struggling with social media in general – but I’ve recently started posting on it and having a great time, trying to choose between the ridiculous amount of cute pictures that I have of them.
So there you have it: concrete evidence that cats are amazing. I’m just kidding, although I do love cats and my cats in particular. I think it’s fascinating that just spending time with animals – and in this case, cats – can have such dramatic effects on us and our health, physical and mental. I hope this has been interesting and fun and if you liked the cute little faces of my cats, please do follow my cat instagram: there will be plenty more photos of them going up.
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Finding Hope 