Claire G.

@throughthefibrofog | contributor
My name is Claire, and I have been diagnosed with fibromyalgia, vestibular migraine, POTS, MCAS, hypermobility and interstitial cystitis. On my instagram @through.the.fibro.fog and blog I share how lifestyle and dietary changes have helped me lead a positive life with chronic illness.
Claire G.

What It Feels Like to Be on Long-Term Antibiotics

Being on long-term antibiotics is, of course, not something anyone wants to do. Yet it can also be an absolute necessity for some of us to treat difficult infections. This is my experience of being on long-term antibiotics several times for bladder infections. It is often a difficult time, both in terms of feeling unwell in terms of physical health and from a mental health perspective too. It is hard to take a medication that people have such strong opinions about, even when it is essential for your health. A diagnosis of interstitial cystitis When you live with multiple chronic illness conditions, it can be easy to overlook a symptom (or two, or three even), in my experience at least. The most difficult get all my attention but the less pesky ones get shoved to the back of my mind, with the thought that I should deal with it. But just not today. When things are better. And I have time. And patience. It was this way with bladder symptoms. I knew I was getting pain, a deep lower abdomen pain that was likely my bladder. And I knew I seemed to need to go to the bathroom rather frequently. But I shoved it to the back of my mind as I was in the midst of dealing with POTS, vestibular migraine and a few other diagnosed conditions that were tough enough. Then my cardiologist asked about my bladder and I went along with the referral to a uro-gynecologist. Things moved quite fast, and I was soon having a cystoscopy which showed inflammation and infection, as well as other tests. Prescription: a three-month course of antibiotics My cystoscopy results led to being prescribed a three-month course of antibiotics, cycling between three different types for two weeks each and then repeating it. I was aghast at this treatment plan to begin with. After all, we are told that we should reduce the number of antibiotics we should take and there are implications for our gut health too. Yet it was also the case that the infection needed to be dealt with, not least of which because it was potentially driving, or at least complicating, my mast cell activation syndrome. I took the first tablet with great reluctance. The thought of 90 days of antibiotics seemed like a huge mountain to climb, and I was anxious about side effects. Side effects My first question to the doctor had been the same as I suspect it is for many of us: what are the side effects? I was told potential nausea, upset stomach and headache, amongst others. The first antibiotic I took was a breeze. It was the strongest, but I was fine. In fact, my IBS stomach was as happy as larry on them. I had fewer IBS issues and was almost happy to be taking them. Then I hit a stumbling block. Antibiotic number two made me nauseous. Really nauseous. On day three I was barely able to move off the sofa, and on day four I was sick. A call to the doctor meant a change in the antibiotic, which worked out fine. It felt like a long time Ninety days is a long time, but I know many in the chronic illness community take antibiotics for far longer. It can be years sometimes, to try and get on top of embedded infections for various medical conditions. In comparison, 90 days is just a drop in the ocean. For me, it felt like a long time, mostly because I was worried about gut health but also because of having to time taking the tablets around food. Some you took an hour before, others an hour after. It was all very confusing. Key tip: use the alarm on your phone to remind you to take the pill! And since then… Since that long-term course of antibiotics, I have had to do the same regime again once, and taken antibiotics at other times for shorter periods too. One year, I calculated I had been on antibiotics for more days than not. It isn’t a nice feeling, and brings worry about overall health, but I knew it was absolutely necessary for me. Aside from bladder issues and recurrent infections (UTIs), I also managed to get infected bug bites several times and a skin infection too. It was a worrying time, and I am sure that being on antibiotics was making me more tired, giving me more headache / migraine days and was problematic for my gut. Ignoring the opinions of others One thing that did upset me during my time on long-term antibiotics was being told over and over by people that I shouldn’t be taking them. I mentioned it on my Instagram and had DMs from people I didn’t know (they didn’t follow me, or vice-versa) and who didn’t know why I was taking them that I was being “stupid” and it was bad for my health. Those kinds of comments are always hurtful and make me a bit angry too. It is upsetting to be criticized for trying to manage health conditions, and any form of pill-shaming can make a person feel wrongly guilty or less than for taking prescribed medication. I knew my doctors were being incredibly careful about my antibiotic use and were prescribing them because there was no other choice. It wasn’t done without thought and care. I had to take a deep breath and realize one thing: at that point, it was the best thing for my health to be on the antibiotics. I had infections that were causing harm and there was no other option to treat them.

Claire G.

Why 'Pill Shaming' Isn't Always Obvious

Answering the question “what is pill shaming?” seems fairly straightforward: it’s shaming someone for taking pills, usually medication and/or painkillers. Sometimes it is friends or family members who do the shaming. Other times it can actually be doctors who do so. But how does this actually take place? Who is targeted for pill shaming? And is it often more sly than obvious in its occurrence? Pill shaming – myself Back in the day, before chronic illness conditions came to be diagnosed thick and fast and medication became an absolute necessity, I used to shame myself for taking pills. When period pain or a bad headache hit, I would try everything I could think of not to take some pain relief. I would drink lots of water, herbal teas the internet told me would cure period pain, force myself to walk even when it made me feel worse, and try to ignore the cramping, searing or tingling pain coursing through my body. Why? Because there is a perception in society that taking pain relief is a “last resort,” only to be done once all other options have been tried. So I would try my best to tough it out and hold on for as long as possible without swallowing the pain relief I needed. The irony being, in relation to migraine at least, that certain forms of pain relief are actually more effective if taken early, rather than if you leave it until later in an attack. Who is targeted through pill shaming? This is a tricky question to answer. If we believe there is an entrenched belief that pills are wrong in society, then we are all in effect targeted. Whether you take an occasional pain killer for a troublesome back or knee, or take regular prescribed medication for epilepsy or fibromyalgia, nobody is outside this belief. It seems though that those with chronic illness and mental health conditions often bear the brunt of pill shaming. Taking regular medication is the most frowned upon, at least in my experience. As discussed below, we experience a great deal of discussion around our prescribed medication, and it is often suggested we try other measures instead. Aside from the views held by friends, family members and even doctors, the media often reports on the “over-medicated” state of certain groups of people (often young women), for certain conditions (such as anxiety). However, perhaps it is simply that doctors are now more understanding, or recognize more conditions that were previously taboo or dismissed. And so those people with anxiety, fibromyalgia and other conditions that were ignored are now beginning to receive the help they desperately need. How does pill shaming take place? Pill shaming seems fairly pervasive in society, at least from what I can see. There are a number of reasons for it, and ways that it takes place. All of them cause harm, both in terms of mental and physical health, to those who internalise them and don’t treat their conditions as advised by their doctors. Of course, taking any form of medication unnecessarily isn’t recommended and can be harmful. This post certainly doesn’t advocate for taking medication that isn’t necessary for health reasons. What I am speaking of in this post is pill shaming people for taking the medication/pain relief they need to have the best quality of life they can, and that is often prescribed by their medical doctor. A belief that pills are poison or toxic I grew up believing that painkillers were bad. I don’t really recall it being said explicitly, but around me everyone waited to take painkillers until they, in their words, “had no choice.” Underpinning this behavior is often a belief that pain relief will “poison” your system if taken too often, and that it is toxic for the body. Taken in large doses or for extended periods of time not under a doctor’s supervision, some medications can be harmful to the body, no question. Anybody that needs to take higher doses needs to be under appropriate medical care for their health needs. But bearing pain can also be harmful, as A Chronic Voice discusses in a post on painkillers. As Sheryl describes, “Pain is also toxic in equal measure, as it impairs our quality of life, and shrivels us up into a shadow of who we once were. In other words, pain sucks the life out of us.” A belief that taking medication is lazy “You should try lifestyle measures.” “It’s lazy to just pop a pill.” “Have you tried exercise/meditation/therapy?” Perceived laziness seems to factor into pill shaming a great deal. Popping a pill is seen as the “easy option” and those that do so are often described as being reckless and not “putting the effort in” while attending to their health. Medication is seen as a lazy person’s response to health issues. Except the opposite is true, from the chronic illness community I know and am fortunate to be a part of. Many of us take medication for all kinds of different health conditions. We have no choice and need (not want) to take medication to manage our symptoms. The vast majority do this alongside, not instead of, lifestyle measures. My Instagram feed is full of people taking all kinds of steps to better manage their health, going to all kinds of measures that I find awe-inspiring and have so much respect for. There are friends who meditate every day, clocking up a year or two on the HeadSpace app, others who walk, run, cycle, change their diet, and investigate and participate in all kinds of alternative therapies. It isn’t a requirement to do so, and pill shaming is wrong whether a person does yoga or not, but what I am saying is that these women (and men) are not “lazy.” I think all of us work damn hard for our health in all kinds of ways. Taking medication is a part of that for many, and isn’t “taking the easy option” in the slightest. The sly Instagram ads Social media is both a wonderful thing and a more insidious one. It is wonderful in terms of the chronic illness community that supports one another so well. But of course, there is a downside and one of those is a more sly form of pill shaming. Sometimes there are companies who outright shame and tell us that we are harming ourselves through medication, and of course, we should be using their amazing wellness products instead. They use slogans like “who needs pills when you can…” or “before you pop a pill, do this!” Other times it is more subtle. It is posts targeted at those with chronic illness, using the appropriate hashtags and even tagging us too, that tell us we will be “cured” if we use certain products or undertake certain activities. Often times medication isn’t mentioned, but the underpinning message is that their products are all that is required to be well. All of those posts feed into the “pills/medication are bad” line. They support a wrongful societal belief that medication is used by the weak/lazy/uneducated who should know better. But you’re too young to need medication! Health conditions don’t have an age. It feels strange to have to state the obvious, but anyone can have health challenges, from babies to kids to teenagers and all the way through to older persons. Yet I know I am not the only one who has listened as a so-called well-meaning friend or family member tells me I am too young to need medication. As though somehow my diagnosed conditions can be “put up with” until I get old enough to need medication. I wonder what they think the appropriate age is to be “allowed” to take medication? You don’t need all those pills (said by a doctor) Pill shaming comes from many angles, but it almost makes me laugh when it comes from a doctor who should obviously know better. Often, it is a doctor I haven’t ever met before, who knows barely any of my medical history aside from a 60-second scan of my notes, that says outright that I take too many medications. Chronic illness conditions often come along like buses, in twos, threes, up to a dozen, maybe more, in many cases. Medication may be required for a few of those conditions or all of them. So when a doctor tells me I take too much medication I have to point out, through gritted teeth, that I have many conditions, so I do indeed need to treat all of them. I often wonder if they think I should pick the most symptomatic condition and only treat that? Or do I get to treat a couple of conditions without receiving negative judgment? Do I then ignore the medical advice of the other specialist doctors who tell me that I very much need to have the other conditions better managed through medication? What is the impact of pill shaming? The impact of pill shaming ranges from moderate to severe. It means I spent far too many hours in tremendous pain trying to tough it out when I could have found relief. It means that people have increased symptoms that impact upon their day. They miss out on family time, work opportunities, hobbies or just simply watching a favorite TV show while not in pain or with other symptoms. Why do people let themselves experience such symptoms without attending to them through medication? Because, as the term suggests, we feel shame for taking prescribed medication or pain relief because of all the reasons given above and the experiences of pill shaming we live through. That shame can spiral into shame about being unwell in the first place, with misguided beliefs that we caused our conditions, or are deserving of mental or physical pain. The internalization of shame can also result in people refusing to take medication prescribed by a doctor, or not taking pain relief when it is required. This can be dangerous to a far more severe degree. We hear stories often in the news of people not taking prescribed anti-depressants, which causes profound mental health issues. There are people who don’t take medication and then wind up in the emergency room with life-altering, perhaps irreparable, issues. And people who feel such shame that they end their lives. Medication can enable lifestyle measures A great deal of the “pills vs. lifestyle” debate centers on one being “bad” (pills) and the other “good,” virtuous even (lifestyle measures). It’s the lazy vs. engaged and active dichotomy in this approach. What this approach misses though is that medication can enable many of us to participate in lifestyle measures or other therapies to further help manage our conditions. It’s a strategy used by many doctors to help us get the best quality of life we can. To give an example, trying to undertake vestibular rehabilitation therapy (VRT) or any exercise with vestibular migraine was not possible for me until medication controlled my attacks. It was medication that calmed my head down and got me to a place where VRT would be helpful and not actually make my symptoms worse. I imagine the same is true of many other conditions. The saving grace of social media Living with chronic illness is often hard. Really hard. It is hard to live with lifelong conditions, daily symptoms and often pain. What makes it even harder is battling against entrenched beliefs that make us question treatment and make us suffer more. We are surrounded by these entrenched beliefs at every turn. Friends and family who follow societal beliefs to think “popping a pill” is wrong, doctors who question our prescribed medications, and social media full of companies out to try and turn a profit by selling us alternative treatments with a sub-text that pills are a “last resort.” The saving grace, I think, is the chronic illness community that rallies against this. My community supports each other’s choices, calls out and blocks the dodgy companies and joyfully posts the clap emoji whenever I get to have the Botox that gave me back my life after chronic migraine had me stuck on the couch for far too long. I guess it is impossible to get away from pill shaming altogether, as sad as that statement is to say. If you experience it, then discussion is all-important, but sometimes advocating for yourself is tough. Perhaps finding others in the same position will be of terrific comfort. I know it is to me.

Claire G.

Why Medical Gaslighting Isn't Always Easy to Spot

Had I just been a victim of medical gaslighting as a woman seen by a male doctor? The thought whizzed through my mind as I almost stumbled out of the consulting room trying not to cry and headed straight to the reception desk to ask to see a different, trusted, doctor. Why the question? Well, medical gaslighting can often be confusing and complex, and perhaps even unclear. How we are treated by a doctor can be bound up in medical language, as well as looks, raised eyebrows, silences even, that all convey something, but we aren’t always sure what. Was it a gendered response? One bound up in power relations? Or was I being over-sensitive? One thing I knew for sure was that it wasn’t the latter. What is medical gaslighting? As described by health.com, “gaslighting” happens when one person tries to convince another to second-guess their instincts and doubt their perception that something is real. Medical gaslighting happens when healthcare professionals downplay or blow off symptoms you know you’re feeling and instead try to convince you they’re caused by something else — or even that you’re imagining them. I doubt there are any official figures of its prevalence, and if there are I can’t locate them, but those in the chronic illness community certainly know how common it is. Instagram Twitter, Facebook and more are filled with stories of such behavior and its traumatic impact. It runs worryingly deep through the medical system — so much so that often patients enter an appointment expecting not to be believed. We anticipate that we will have to fight to be heard, and treated accordingly. An experience of medical gaslighting I went to my usual doctor about an issue, and he suggested I seek a second opinion in case he had missed something. I respect that suggestion; it shows he understands that no doctor is fallible. Ego was left at the door, and he put my care first to check the issues. So I made an appointment with the head GP of my doctor’s surgery. It began well. Friendly, polite, as it should be. Then something went awry. I spoke of the issue and he didn’t examine me. Instead, he told me he couldn’t see a problem. I pointed out that maybe he wouldn’t be able to visually see it, but he could feel it. I needed a physical examination, not a visual one. It spiraled quickly. He refused, but without actually saying no. I got looks, contemptuous remarks and he spoke down to me. When I said I could complain about his behavior, he sarcastically said that was my right and to go right ahead. How can we know if a situation was one of medical gaslighting? In hindsight, it isn’t difficult to pinpoint moments of medical gaslighting in that appointment, but at the time it felt hazy and uncertain. I knew that he was downplaying, refusing even, that I had an issue. He said he couldn’t see it. Refused to examine me. Except he didn’t outright say no. He just didn’t, wouldn’t do it. I got silence when I said that is what needed to be done. Medical gaslighting can be obvious at times. It can be an outright refusal to acknowledge the symptom the patient describes to a doctor, or a downplaying of the severity or frequency of symptoms. It can be suggesting that the patient is exaggerating, often said in careful words so as not to actually use the words “exaggerating” or “making it up.” Other times medical gaslighting can be harder to identify. Communication isn’t just through spoken words. It can be a condescending sigh, a raised eyebrow, a silence after a question the patient asks. Those forms of communication aren’t noted on our medical records, aren’t recorded in any way. If raised, perhaps it will be said the patient was mistaken. After all, such gestures lack concrete meaning and may be subjective in their interpretation by another. I feel as though I am going to use the words “complex” and ‘challenging’ a great deal in this post. Yet medical gaslighting often is. It’s not clear-cut at times, or certainly not in a way that could be proven. I think the patient usually knows though. They sense it, feel it, get understandably angry by it. The “it’s all in your head” line For those in the chronic illness community, the sheer number of patients who are told their symptoms are “just” anxiety won’t be a surprise. Dysautonomia International describes that “prior to being diagnosed with POTS, 59% of patients were told by a doctor that their symptoms were ‘all in your head.'” In my experience, the same was true for vestibular migraine. Others have said they had the same experience in regards to endometriosis. This is also an area of complexity. Of course, many people do have anxiety. It is a challenging condition that requires medical support and treatment. It certainly isn’t a lifestyle choice or a trendy “thing to have,” as some in society seem to believe. When it comes to a diagnosis of a chronic condition, the link (or not) to anxiety can be a diagnostic challenge. Does the patient have anxiety or another condition with similar symptoms? A racing heart, dizziness, feeling faint, nausea and more can be symptoms of anxiety, but they can also be symptoms of POTS, for example. When such symptoms are described by the patient, it is time for the doctor to undertake a thorough medical history, ask questions, perhaps conduct a physical examination depending upon symptoms, and refer for tests if required (which it often is). Falling back on “it’s probably anxiety” without due regard for other possibilities is lazy medical care. And of course, chronic illness conditions and anxiety are further complicated by cause and effect. I felt as though I may as well bash my head against a consulting room wall on one occasion when I said, over and over, that it was the symptoms of vestibular migraine that were making me anxious, not that anxiety was causing the symptoms. I walked out of the room knowing I hadn’t won that “fight,” and angry that my experience had been sidelined for a pre-conceived view of the relationship between chronic illness and anxiety. What is the impact of medical gaslighting on the patient? Medical gaslighting delays a diagnosis, simply put. That delay then of course delays appropriate treatment. It leaves the patient in pain, or with other symptoms longer than necessary. It may mean that their health spirals into greater issues, potentially in an irreversible way. The impact of medical gaslighting also has a psychological element. It is traumatic not to be believed in your pain. We go to doctors for help, for care, and hopefully for some empathy and kindness in treating the issue at hand. To be disrespected by the very people who are supposed to put your needs first is distressing (to put it mildly). It leads to a distrust of doctors at times, something that can prevent patients from seeking help for further health issues.

Claire G.

Being 'Clinically Extremely Vulnerable' During the COVID-19 Pandemic

As I look back at 2020, it is of living a life under shielding. A tough and difficult year led largely within my four walls, watching the news each day with increasing fear around the events unfolding and hope for a positive change. Back in the spring, I recoiled with horror and tears when I received my shielding letter. Shielding is a U.K. initiative where “clinically extremely vulnerable” persons are identified and given advice on how to protect themselves. To begin with, we were offered support, although this largely waned as the months ticked by. I thought it was a temporary situation of a few months when that letter dropped through my letterbox. Perhaps I was naive, perhaps I was being hopeful. At the moment, my hope is largely lost as it seems that 2021 will also be characterized as a life under shielding, or at least to begin with. The Beginning The beginning of my life under shielding was completely astonishing. I was astonished at the global situation which seemed to take hold so fast, astonished at those denying it and astonished that I was considered clinically extremely vulnerable. Tears, many tears, were shed and I was incredibly anxious for many weeks, perhaps months. That anxiety is bubbling up again as the U.K. situation worsens day by day. Life under shielding was also the beginning of one thing that characterizes the daily life of those of us more high risk, and many who are not: cleaning. Everything that enters my home is sprayed with abandon with antibac, and depending on the object it may then also go into what I call “garage quarantine.” This physical jail for my deliveries houses everything from cans of coconut milk to a pair of migraine glasses to my medications. It’s like the world’s weirdest bric-a-brac shop, with the “entry date” of said items noted on my calendar and when they can be released back into society (i.e. my home!). Perhaps others will be even stricter with cleaning than me, others less. But any form of risk is a risk, and for me just not worth a throw of the dice. On a lighter note, perhaps others will have become experts, like me, at opening doors and drawers with an elbow or toe when our hands are “dirty” and need a good scrub with soap. A friend told me she can open a tin can with one hand after touching a “suspect” package. I suggested she may just want to wash her hands first! Changing seasons It’s very odd being inside for so long, and time seems to go quickly and slowly all at the same time. A tree in my back garden symbolizes time as it ticks through the seasons. As the pandemic took full force, it was covered in delicate white flowers, and looked so pretty against the blue sky. Those leaves fell to the grass and green leaves took their place. The harsh summer sun slightly scorched those leaves, and they soon turned brown and fluttered to the ground as autumn brought chillier air but beautiful sunsets. Seasons came and went, and that tree changed so much. I didn’t feel as though life was changing at all, though. I was still home, and doing the same routine of work, clean, work more, clean more and the at-home workouts we all grew to half love and half hate. But, like that tree, life will change for us all. It’s going to take some time, and a lot more time than I think any of us ever envisioned, but it will change for the better. We just have to have patience, a habit I am bad at but have no choice but to learn in 2020 and 2021. Lessons learned I think lockdown has been revealing for many reasons. It has taught me patience. Well, perhaps I should re-phrase that to “it’s teaching me patience” as I may not fully be there yet! But it has taught me to be very self-reliant, that’s for sure. Not seeing friends or some family members for close to a year now is isolating and lonely at times. Thank goodness for all the antics from my cat to keep me smiling. We have been creative and come up with ways to stay together despite being apart. A favorite game via Zoom with my nieces is a sort-of Pictionary, and we do “family spellings.” A couple of times a week I set my 6-year-old niece at least three spellings, which she prefers to be themed.” We have done a summer version with words such as island and suncream, and festive-themed with the names of Santa’s reindeer. She then gives me spellings back, ranging from the word ‘gel’ to names of dinosaurs I haven’t ever heard of. Consistency with the difficulty of the spellings given to me is rather variable! The continuity of chronic illness symptoms Chronic illness symptoms continue to grace me with their presence. After all, that’s why I am living a life under shielding in the first place, and they definitely don’t let up just because we are in the midst of a pandemic. My usual treatments of Botox for chronic migraine and bladder instillations were stopped for quite some time, and while I could go now, it doesn’t seem worth the risk of train journeys and hospital visits. So those symptoms are taking center-stage more than usual. It is interesting to see that my fatigue is perhaps slightly better since staying home. I can only think that my prior life of frequent medical appointments, work projects and seeing friends and family was taking far too much out of me. I guess I probably should have guessed by the collapse-on-the-bed moment I had every time I got home and that making dinner or even just getting ready for bed felt like running a marathon with lead boots on. So that’s some of my experiences with life under shielding in 2020, and now into 2021. There is so much more to be said about this hard and difficult experience, but I hope so much that this new year will be brighter for all of us. Take care everyone.

Claire G.

Being 'Clinically Extremely Vulnerable' During the COVID-19 Pandemic

As I look back at 2020, it is of living a life under shielding. A tough and difficult year led largely within my four walls, watching the news each day with increasing fear around the events unfolding and hope for a positive change. Back in the spring, I recoiled with horror and tears when I received my shielding letter. Shielding is a U.K. initiative where “clinically extremely vulnerable” persons are identified and given advice on how to protect themselves. To begin with, we were offered support, although this largely waned as the months ticked by. I thought it was a temporary situation of a few months when that letter dropped through my letterbox. Perhaps I was naive, perhaps I was being hopeful. At the moment, my hope is largely lost as it seems that 2021 will also be characterized as a life under shielding, or at least to begin with. The Beginning The beginning of my life under shielding was completely astonishing. I was astonished at the global situation which seemed to take hold so fast, astonished at those denying it and astonished that I was considered clinically extremely vulnerable. Tears, many tears, were shed and I was incredibly anxious for many weeks, perhaps months. That anxiety is bubbling up again as the U.K. situation worsens day by day. Life under shielding was also the beginning of one thing that characterizes the daily life of those of us more high risk, and many who are not: cleaning. Everything that enters my home is sprayed with abandon with antibac, and depending on the object it may then also go into what I call “garage quarantine.” This physical jail for my deliveries houses everything from cans of coconut milk to a pair of migraine glasses to my medications. It’s like the world’s weirdest bric-a-brac shop, with the “entry date” of said items noted on my calendar and when they can be released back into society (i.e. my home!). Perhaps others will be even stricter with cleaning than me, others less. But any form of risk is a risk, and for me just not worth a throw of the dice. On a lighter note, perhaps others will have become experts, like me, at opening doors and drawers with an elbow or toe when our hands are “dirty” and need a good scrub with soap. A friend told me she can open a tin can with one hand after touching a “suspect” package. I suggested she may just want to wash her hands first! Changing seasons It’s very odd being inside for so long, and time seems to go quickly and slowly all at the same time. A tree in my back garden symbolizes time as it ticks through the seasons. As the pandemic took full force, it was covered in delicate white flowers, and looked so pretty against the blue sky. Those leaves fell to the grass and green leaves took their place. The harsh summer sun slightly scorched those leaves, and they soon turned brown and fluttered to the ground as autumn brought chillier air but beautiful sunsets. Seasons came and went, and that tree changed so much. I didn’t feel as though life was changing at all, though. I was still home, and doing the same routine of work, clean, work more, clean more and the at-home workouts we all grew to half love and half hate. But, like that tree, life will change for us all. It’s going to take some time, and a lot more time than I think any of us ever envisioned, but it will change for the better. We just have to have patience, a habit I am bad at but have no choice but to learn in 2020 and 2021. Lessons learned I think lockdown has been revealing for many reasons. It has taught me patience. Well, perhaps I should re-phrase that to “it’s teaching me patience” as I may not fully be there yet! But it has taught me to be very self-reliant, that’s for sure. Not seeing friends or some family members for close to a year now is isolating and lonely at times. Thank goodness for all the antics from my cat to keep me smiling. We have been creative and come up with ways to stay together despite being apart. A favorite game via Zoom with my nieces is a sort-of Pictionary, and we do “family spellings.” A couple of times a week I set my 6-year-old niece at least three spellings, which she prefers to be themed.” We have done a summer version with words such as island and suncream, and festive-themed with the names of Santa’s reindeer. She then gives me spellings back, ranging from the word ‘gel’ to names of dinosaurs I haven’t ever heard of. Consistency with the difficulty of the spellings given to me is rather variable! The continuity of chronic illness symptoms Chronic illness symptoms continue to grace me with their presence. After all, that’s why I am living a life under shielding in the first place, and they definitely don’t let up just because we are in the midst of a pandemic. My usual treatments of Botox for chronic migraine and bladder instillations were stopped for quite some time, and while I could go now, it doesn’t seem worth the risk of train journeys and hospital visits. So those symptoms are taking center-stage more than usual. It is interesting to see that my fatigue is perhaps slightly better since staying home. I can only think that my prior life of frequent medical appointments, work projects and seeing friends and family was taking far too much out of me. I guess I probably should have guessed by the collapse-on-the-bed moment I had every time I got home and that making dinner or even just getting ready for bed felt like running a marathon with lead boots on. So that’s some of my experiences with life under shielding in 2020, and now into 2021. There is so much more to be said about this hard and difficult experience, but I hope so much that this new year will be brighter for all of us. Take care everyone.

Claire G.

The 'Healthy' Advice That Could Harm People With MCAS

We seem to live in a world where “healthy” advice is given at every turn. People sipping a matcha latte, popping all the supplements they can fit in their bag and then going for a HIIT workout (with smoothie afterward of course) and then suggesting you do the same. Yet some seemingly “healthy” pursuits can be just the opposite if you are living with MCAS (mast cell activation syndrome) as I am. It can get a little frustrating to be almost frowned upon by not going with the crowd and for explaining why you are eating fries, not salad (more on that below!). When you have MCAS, triggers can be very individual. So if these things work for you then that’s great, but for many people, they can actually be harmful. The moral of the story? Always check things with your doctor! 1. Food and drink Many people living with MCAS are advised to follow a low histamine diet and to avoid certain foods. When I walked out of my medical diagnosis appointment with my list of “allowed” and restricted foods, I was lost. As well as having lots of foods I loved on it, it also had many I thought were really good for me, such as green tea, tomatoes, spinach and avocado. How was I going to make salad without those? So, sometimes I will end up eating fries rather than a salad when I’m eating out for lunch. Am I being unhealthy? Well yes and no. Yes, because let’s face it, fries aren’t the healthiest. But no, because the alternatives on a cafe menu aren’t healthy for me as a person with MCAS. And the looks you get from others about ordering fries? Honestly, I have learned to ignore them. 2. Intense exercise That HIIT workout, spinning class or half marathon your friends may knock out on the weekend? Well, healthy for them perhaps, but unlikely for those with MCAS. Exercise can be a trigger for mast cell activation and so result in symptoms. Perhaps exercise isn’t possible for you, or perhaps it needs to be of a lower intensity and activities such as yoga, pilates or a gentle walk. I’ve learned to consult with a qualified physiotherapist to develop a program suitable for me with my various health conditions. 3. Saunas or steam rooms There’s a lot of (controversial) talk of sweating out toxins these days by using a sauna or steam room. If I did that I would be so unwell (and yes, I’ve tried, years ago). I felt faint and had painful pink burning cheeks within minutes. I felt awful. Heat can be a trigger for mast cell activation, so I would suggest caution over this supposedly healthy pastime and, again, check with a doctor before trying it out. 4. Supplements Some supplements can be beneficial for some of us with MCAS, but others may be harmful. There is a lot of chatter on social media about supplements and celebrities promoting products, but it’s always best to speak with a doctor before trying something new. 5. Essential oils Fragrance seems to be everywhere at the moment. Every shop seems to have candles burning, and diffusers pumping out strong-smelling scents. Gifts for birthdays and the holidays often involve perfume or scented personal care items. I have to give them all away to friends or family. Essential oils have that “healthy” status. Many people find them helpful when they feel unwell, using peppermint for migraine or lavender to help with sleep. If this works for you then that’s really good. However, with MCAS this may not be possible and it could trigger an attack. After all, many people with MCAS have to wear an N95 mask (pre-pandemic, not because of it) when going to public areas due to scents. “Healthy” can mean very different things for different people. It can even mean different things for those living with the same medical condition. Working out what is healthy for me has been the best way forward with my health and to help me feel as well as I can with my chronic illness conditions.

Claire G.

The Isolation of Living With Chronic Headache

Living with chronic headache means living with pain from the first moment of waking to the last moment until you fall asleep at night. It’s a relentless pain, but one that I feel often gets dismissed as “just a headache” and so not really something that impacts on daily life. Yet it does just that. It is always there, through every day and every life experience. What is chronic headache? Chronic daily headache is described as “when you have a headache for more than four hours on more than 15 days per month.” Some people experience these headaches for six months or longer, and some people, like myself, always have a degree of pain each and every day. Causes of chronic headache As the Migraine Trust describes, chronic daily headache is associated with: head injury a previous history of migraine overuse of painkilling medications obesity stressful life events being female Living with chronic headache It always feels strange to say I am in pain all the time. I still feel a little shocked that is the case, and that my head is always causing me to be in that state. Chronic headache symptoms will differ for everyone who lives with it, and mine certainly change through the course of the day. Pain goes up and down, and changes in its form too. Sometimes it is a dull thud in the temples, other times a sharper pain at the back of my head. And sometimes it escalates up to a migraine attack. A feeling of isolation As I’m sure you can imagine, being in constant pain is draining. The relentless nature of living with chronic headache can really get me down at times. It’s never-ending and always there, from morning until night. There isn’t a fun day out, a cozy night in or a chat with a friend that isn’t experienced with pain. Being in pain 24/7 can lead to people retreating a bit from society, as was discussed at a migraine webinar I attended a while ago. I can definitely relate as when my everyday pain level was higher, and I was also experiencing profound dizziness from vestibular migraine, I was mostly at home as my symptoms were too overwhelming to do much else. Pain is isolating in many ways. As well as meaning we can’t always be out and about as much, I can feel somewhat detached from others as they don’t “get it” when I explain my pain, and that it really is an ongoing and constant state. There feels like a gap between my experience of a situation and theirs, which can be difficult at times. Every moment in my life is imbued with a cloud of pain. I am aware that theirs isn’t. It makes me feel a step removed from others, a feeling that is upsetting and confusing, as I want to feel as connected to my friends as possible. The migraine comparison “But at least it isn’t migraine.” I’ve heard people say this so often about chronic headache, which I find frustrating as it undermines that those with the condition really experience an often debilitating condition that impacts daily life. I have both “classic” migraine attacks and vestibular migraine. And yes, of course, migraine attacks are worse in their severity than the pain that comes with chronic headache. No question. But that doesn’t mean that chronic headache isn’t hard. At times it can actually feel harder as it is so relentless, when (at least for me) migraine attacks come and go. I don’t think comparison is helpful though, and we should receive support for whatever pain we experience.

Claire G.

The Isolation of Living With Chronic Headache

Living with chronic headache means living with pain from the first moment of waking to the last moment until you fall asleep at night. It’s a relentless pain, but one that I feel often gets dismissed as “just a headache” and so not really something that impacts on daily life. Yet it does just that. It is always there, through every day and every life experience. What is chronic headache? Chronic daily headache is described as “when you have a headache for more than four hours on more than 15 days per month.” Some people experience these headaches for six months or longer, and some people, like myself, always have a degree of pain each and every day. Causes of chronic headache As the Migraine Trust describes, chronic daily headache is associated with: head injury a previous history of migraine overuse of painkilling medications obesity stressful life events being female Living with chronic headache It always feels strange to say I am in pain all the time. I still feel a little shocked that is the case, and that my head is always causing me to be in that state. Chronic headache symptoms will differ for everyone who lives with it, and mine certainly change through the course of the day. Pain goes up and down, and changes in its form too. Sometimes it is a dull thud in the temples, other times a sharper pain at the back of my head. And sometimes it escalates up to a migraine attack. A feeling of isolation As I’m sure you can imagine, being in constant pain is draining. The relentless nature of living with chronic headache can really get me down at times. It’s never-ending and always there, from morning until night. There isn’t a fun day out, a cozy night in or a chat with a friend that isn’t experienced with pain. Being in pain 24/7 can lead to people retreating a bit from society, as was discussed at a migraine webinar I attended a while ago. I can definitely relate as when my everyday pain level was higher, and I was also experiencing profound dizziness from vestibular migraine, I was mostly at home as my symptoms were too overwhelming to do much else. Pain is isolating in many ways. As well as meaning we can’t always be out and about as much, I can feel somewhat detached from others as they don’t “get it” when I explain my pain, and that it really is an ongoing and constant state. There feels like a gap between my experience of a situation and theirs, which can be difficult at times. Every moment in my life is imbued with a cloud of pain. I am aware that theirs isn’t. It makes me feel a step removed from others, a feeling that is upsetting and confusing, as I want to feel as connected to my friends as possible. The migraine comparison “But at least it isn’t migraine.” I’ve heard people say this so often about chronic headache, which I find frustrating as it undermines that those with the condition really experience an often debilitating condition that impacts daily life. I have both “classic” migraine attacks and vestibular migraine. And yes, of course, migraine attacks are worse in their severity than the pain that comes with chronic headache. No question. But that doesn’t mean that chronic headache isn’t hard. At times it can actually feel harder as it is so relentless, when (at least for me) migraine attacks come and go. I don’t think comparison is helpful though, and we should receive support for whatever pain we experience.

Claire G.

The Isolation of Living With Chronic Headache

Living with chronic headache means living with pain from the first moment of waking to the last moment until you fall asleep at night. It’s a relentless pain, but one that I feel often gets dismissed as “just a headache” and so not really something that impacts on daily life. Yet it does just that. It is always there, through every day and every life experience. What is chronic headache? Chronic daily headache is described as “when you have a headache for more than four hours on more than 15 days per month.” Some people experience these headaches for six months or longer, and some people, like myself, always have a degree of pain each and every day. Causes of chronic headache As the Migraine Trust describes, chronic daily headache is associated with: head injury a previous history of migraine overuse of painkilling medications obesity stressful life events being female Living with chronic headache It always feels strange to say I am in pain all the time. I still feel a little shocked that is the case, and that my head is always causing me to be in that state. Chronic headache symptoms will differ for everyone who lives with it, and mine certainly change through the course of the day. Pain goes up and down, and changes in its form too. Sometimes it is a dull thud in the temples, other times a sharper pain at the back of my head. And sometimes it escalates up to a migraine attack. A feeling of isolation As I’m sure you can imagine, being in constant pain is draining. The relentless nature of living with chronic headache can really get me down at times. It’s never-ending and always there, from morning until night. There isn’t a fun day out, a cozy night in or a chat with a friend that isn’t experienced with pain. Being in pain 24/7 can lead to people retreating a bit from society, as was discussed at a migraine webinar I attended a while ago. I can definitely relate as when my everyday pain level was higher, and I was also experiencing profound dizziness from vestibular migraine, I was mostly at home as my symptoms were too overwhelming to do much else. Pain is isolating in many ways. As well as meaning we can’t always be out and about as much, I can feel somewhat detached from others as they don’t “get it” when I explain my pain, and that it really is an ongoing and constant state. There feels like a gap between my experience of a situation and theirs, which can be difficult at times. Every moment in my life is imbued with a cloud of pain. I am aware that theirs isn’t. It makes me feel a step removed from others, a feeling that is upsetting and confusing, as I want to feel as connected to my friends as possible. The migraine comparison “But at least it isn’t migraine.” I’ve heard people say this so often about chronic headache, which I find frustrating as it undermines that those with the condition really experience an often debilitating condition that impacts daily life. I have both “classic” migraine attacks and vestibular migraine. And yes, of course, migraine attacks are worse in their severity than the pain that comes with chronic headache. No question. But that doesn’t mean that chronic headache isn’t hard. At times it can actually feel harder as it is so relentless, when (at least for me) migraine attacks come and go. I don’t think comparison is helpful though, and we should receive support for whatever pain we experience.

Claire G.

The 'Healthy' Advice That Could Harm People With MCAS

We seem to live in a world where “healthy” advice is given at every turn. People sipping a matcha latte, popping all the supplements they can fit in their bag and then going for a HIIT workout (with smoothie afterward of course) and then suggesting you do the same. Yet some seemingly “healthy” pursuits can be just the opposite if you are living with MCAS (mast cell activation syndrome) as I am. It can get a little frustrating to be almost frowned upon by not going with the crowd and for explaining why you are eating fries, not salad (more on that below!). When you have MCAS, triggers can be very individual. So if these things work for you then that’s great, but for many people, they can actually be harmful. The moral of the story? Always check things with your doctor! 1. Food and drink Many people living with MCAS are advised to follow a low histamine diet and to avoid certain foods. When I walked out of my medical diagnosis appointment with my list of “allowed” and restricted foods, I was lost. As well as having lots of foods I loved on it, it also had many I thought were really good for me, such as green tea, tomatoes, spinach and avocado. How was I going to make salad without those? So, sometimes I will end up eating fries rather than a salad when I’m eating out for lunch. Am I being unhealthy? Well yes and no. Yes, because let’s face it, fries aren’t the healthiest. But no, because the alternatives on a cafe menu aren’t healthy for me as a person with MCAS. And the looks you get from others about ordering fries? Honestly, I have learned to ignore them. 2. Intense exercise That HIIT workout, spinning class or half marathon your friends may knock out on the weekend? Well, healthy for them perhaps, but unlikely for those with MCAS. Exercise can be a trigger for mast cell activation and so result in symptoms. Perhaps exercise isn’t possible for you, or perhaps it needs to be of a lower intensity and activities such as yoga, pilates or a gentle walk. I’ve learned to consult with a qualified physiotherapist to develop a program suitable for me with my various health conditions. 3. Saunas or steam rooms There’s a lot of (controversial) talk of sweating out toxins these days by using a sauna or steam room. If I did that I would be so unwell (and yes, I’ve tried, years ago). I felt faint and had painful pink burning cheeks within minutes. I felt awful. Heat can be a trigger for mast cell activation, so I would suggest caution over this supposedly healthy pastime and, again, check with a doctor before trying it out. 4. Supplements Some supplements can be beneficial for some of us with MCAS, but others may be harmful. There is a lot of chatter on social media about supplements and celebrities promoting products, but it’s always best to speak with a doctor before trying something new. 5. Essential oils Fragrance seems to be everywhere at the moment. Every shop seems to have candles burning, and diffusers pumping out strong-smelling scents. Gifts for birthdays and the holidays often involve perfume or scented personal care items. I have to give them all away to friends or family. Essential oils have that “healthy” status. Many people find them helpful when they feel unwell, using peppermint for migraine or lavender to help with sleep. If this works for you then that’s really good. However, with MCAS this may not be possible and it could trigger an attack. After all, many people with MCAS have to wear an N95 mask (pre-pandemic, not because of it) when going to public areas due to scents. “Healthy” can mean very different things for different people. It can even mean different things for those living with the same medical condition. Working out what is healthy for me has been the best way forward with my health and to help me feel as well as I can with my chronic illness conditions.