After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’
The prompts for this month are:
Here we go…
After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms. But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.
I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you. But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition. Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.
In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years. Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms. I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.
In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy. The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.
Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life. It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.
Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain. Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances. When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition. But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.
And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings. But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!). It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.
It is little victories like the theatre trip which I am celebrating this month. It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives. Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration. I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.
To end, I think I would like to invite more opportunity into my life. Perhaps, by expanding my writing beyond the blog. Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know! Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle. Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know. But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.
Again, we have just bared witness as tour diaries turned the page over into a brand new year. And as such, we begin to reflect on the previous year and make plans for the next. With the best intentions, people make resolutions only to break them before the end of January.
When living with a chronic illness, however, life becomes unpredictable. Every day we wake up, never knowing how our bodies are going to behave that minute, hour or day. We never know how we are going to feel one minute to the next.
As a result, making resolutions to us seems to be futile. How can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? By doing so, are we setting ourselves up for possible failure by making unrealistic expectations?
Last year, therefore, instead of making such demands on my life, which due to my fragile body I may not be able to accomplish, I come up with a ‘theme’ for the year ahead. One word that reflects how I wish to live my life and be a reflection of the type of person I want to become. The chosen word is said to be a compass to help direct us to make smart decisions as well as a guide to the best way to live life day-to-day.
It is now my third year in choosing a word of the year. In 2016 my chosen word was hope, and my word for 2017 was grace.
I had been having a hard time, however, of choosing a word to help direct how I wanted me and my life to become. Inspiration came this morning when the weakness in the legs consumed me and was unable to get out of bed. It is unfortunately not an uncommon experience for me, and such ‘attacks’ have even known to last all day. The strength and function of my legs returned a couple of hours later and was able to get out of bed. Then Eureka, the word came to me – resilience.
Resilience is defined as “the capacity to recover quickly from difficulties.” It is a quality in which a person rather than letting failure or obstacles defeat them, they find a way to overcome such stumbling blocks and rise from the ashes. When living with a chronic illness, resilience is also about learning to recognise and accept that life with an illness is much like riding a rollercoaster, with many ups and downs. Secondly, it is about learning coping strategies to acquire the strength and ability to take the ride. Then, an action plan can be put in place to help ourselves better cope with the challenges caused by chronic illness.
Some say that resilience is a quality that I possess in great supply. These people see a person who despite everything a neurological condition throws at her, she still manages to get up and get on with life. But, then again I don’t have much choice.
But emotionally when dealing with setbacks and the upheaval of coping when the symptoms are at its worse, then I somewhat of a mess! The negativity and upset that it causes impacts on my internal dialogue, my behaviours and my self-worth, and leaves me feeling depleted and flat. So, resilience is my word for the year as I want to learn to be more conscious of how life with this neurological condition is impacting me and to decide how I want to react.
Emotionally, I want to be able to bounce back quickly after confronting such debilitating symptoms. To not dwell on the negative and instead more productive ways to cope when these do occur.
I am starting my journey to resilience by keeping a ‘joy jar.’
Every day it is going to be my mission to write something that gave me joy, or that something that I managed to accomplish despite the limitations that the neurological condition places on my everyday life. I can look back on these little notes of joy, positivity and encouragement on the awful days and allow myself to remember everything that I able to do instead of focusing on what I cannot or no longer able to do.
Wish me luck on my journey of discovering resilience!
Loneliness. Isolation. Solitude. Three words that I would describe life with a neurological disorder, excluding words associated with the symptoms that accompany said condition.
Having experienced symptoms related to the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years and perhaps one of the reasons it remains my favourite film to this day.
Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone. I have been bullied by so-called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.
It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.
It seems that if you politely decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition.
We desperately want to be included in the goings of our social groups and invited to events even if we aren’t always able to attend. Our anthem song slowly becomes ‘All By Myself’, and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.
I am limited so much by my condition; the dizziness so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.
Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.
Also during the very first cruise, due to the severity of my symptoms at that time, much of the holiday was spent cooped up in our cabin. Unable to even get out once outside of the ship to enjoy the surroundings and activities that the beautiful countries such as Italy had to offer.
And as much as I wanted to persist and visit the places our holiday had to offer. As much as I would like to get out of my ‘prison’ cell and go out and participate fully in life, it is incredibly difficult. In everyday life, it feels as though I am continually being held hostage by the pain, dizziness, and fatigue as well as the myriad of other symptoms that I experience because of this neurological condition.
At other times, it is not the want to go out or being held hostage by symptoms of chronic illness that keeps me prisoner but rather the lack of opportunity.
Others may assume that I will be forced to decline the invitation due to ill health, or I am merely forgotten, but whatever the reason I’m once again excluded, ostracised. Even in the darkest times, and after experiencing the extreme depths of loneliness and isolation, I crave the company of others, at least the companionship of others who I don’t live with and already regularly see!
You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded from, which little by little chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations as after being stuck inside the house for so long it seems that you have forgotten how to converse!
Amidst the constant solitude, we are instead forced to find companionship amongst our favourite books. Whenever I reread ‘Little Women’, a book that I read for the first time as a child it is like saying hello again to an old friend. Failing that and perhaps on some of our worst days, then it is our favourite TV shows and those that portray our favourite TV and literature characters that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.
Social media and the vast community that exists of fellow warriors, also living with long-term health conditions helps with the loneliness and isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through as they experience it to can bring welcome light into the darkness, and at last making, you feel less alone in the world especially when living with a rare or complex disorder like me.
It is relationships like these which help loosen the shackles and somewhat releases you from the prison that living with a chronic illness has built.
Who else can relate? What do you do to get out of your personal ‘prison’?
I am so sorry if you can relate, and that loneliness, isolation and solitude is a regular part of your life with chronic illness. But remember that you are not alone and feel free to comment below, or even email me or connect with me on social media (links at the top of the page).
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.
Rewind to the end of the last month, and some of you may remember the blog post I published regarding my personal struggles with chronic pain; how living with constant pain has begun pass for attempting to survive catastrophic and torrential storms. I have made many attempts to try and ‘fix’ the excruciating pain which radiates throughout my legs, but nothing has worked, and the prescribed medications that I have so far tried has done little to relieve the neuropathic pain. This year, after seeing a specialist in London, a visit to a chronic pain clinic has now been put in motion, but after months of wrestling with intense pain, I am in need of some respite from it since yesterday!
Then in August of this year, I was contacted by Chronic Illness Bloggers who asked if I was interested in reviewing the Quell. I had researched many products which claimed to alleviate chronic pain, however, in many of the cases, the wearable technology is worn at the site of the pain which raises questions on where to place the device when the neuropathic pain radiates throughout both legs.
But Quell solves this problem, as no matter where in the body the pain originates the Quell is worn on the upper calf to stimulate sensory nerves, tapping into the body’s natural pain relief response. In other words, by stimulating these sensory nerves in your calf, sends a message to the brain to block pain signals, which in turn leads to widespread pain relief.
What is the Quell?
The Quell is an entirely safe, natural and drug-free pain relief device that is used to manage chronic pain. It is, therefore, safe to wear 24/7 for round the clock pain relief, for those like myself who suffer from constant chronic pain, and suffers from disrupted sleep because of it.
The device sits inside a pocket of the adjustable exercise band (also included in the Quell starter pack) and which an electrode strip is snapped merely on at the back of the small, thin device. These electrode strips (which I received a month;s supply of) are placed onto the skin of the upper calf, approximately 1 to 2 inches below the knee and once the band is fastened in places with velcro and the device is switched on you are ready to go!
Calibrating the Quell
However, before using the Quell for the first time and to continue receiving the optimal pain relief for your personal needs, the device needs to be calibrated. This quick and easy step is done by sitting with your feet on the floor and knees bent at a 90°. Then to begin the calibration, you hold the button on the device until the lights start running back and forth. Release the button and then any time you feel a slight tingle, press the button. The calibration is complete when the lights on the device go off, and you are then ready to start full therapy sessions.
This step could not be quicker or easier to complete! In fact, I calibrated my Quell device before leaving on a four-day break with a local bus company with my Mum. The pain had been so severe that I was concerned about the impact it would have on my time away, especially with the number of trips on the itinerary. I was relieved when I received my device on the day before we were due to leave, in the hopes it would have a positive effect on my pain. It didn’t take long at all to calibrate the device, and it was then ready to use while we were travelling to our destination on the bus!
Is the Quell easy to use?
In the simplest terms, yes, it is straightforward to use, and even those who may be technologically challenged would find the Quell uncomplicated! All that is required is to put the device, press the button to switch it on and then leave it and go about your day as usual! The Quell delivers therapy sessions for an hour, then gives you a break for 60 minutes, before starting another cycle automatically (there is also a Quell app which can be used to change the frequency of the sessions).
There are four different options: the standard is a therapeutic session that lasts 60 minutes, followed by an hour break before restarting; manual in which again has a 60 minute therapy time but you have to start following sessions manually. A low therapeutic dose is a 30-minute session that restarts after a 60-minute break, and a high therapeutic treatment which involves a 60-minute session and restarts after a 30-minute break.
After four therapy sessions, it will buzz at the end to remind you to let the skin on your leg for a breather. If you feel the need to continue receiving sessions, however, as I had done when the pain was at its worst you can switch the device to the other leg.
It may be necessary, as everyone’s experience of pain is different, and so Quell has designed the device as such that you can also increase or decrease the intensity of the therapy that the device delivers. To do this, you hold the button on the device down until you see all six lights flashing. Keep holding until the intensity reaches a level you are satisfied. To decrease the intensity, press the button once. To switch the device off completely, press the button four times.
As previously mentioned, the Quell also works with an app that is available on smartphones (available in Apple App Store and Google Play). All in all, I much prefer using the app as it saves so much time in the mornings when I want to start using the device as part of my pain management. All I have to do is press the start button and voila! However, while I was away, I did appreciate having the option to operate the device manually as I wanted to save precious battery life on my phone to take plenty of pictures of our trip.
Although, to my surprise, when connecting the Quell via Bluetooth to my phone in the night to track my sleep, it didn’t use as much battery life as I was anticipating (great to know if you rely on your phone as much as I do!). I read other reviews in which they had used the app for Apple devices and had a feature that reminded you when to change the electrodes (which last approximately 2 weeks) however this particular feature isn’t available on the app for Android smartphones, and which hopefully the developers will rectify. Another aspect that is sadly missing from the Android app is seeing the level that the intensity is currently at; no numerical data available to know how high or low the intensity is at which makes adjusting to your preferred level in future sessions difficult.
The app is also helpful as it notes how many regimens you have had that day (Quell recommends that you have at least 2 to 3 full therapy sessions for the first month). The Quell app also lets you know the amount of battery life left on the device, so you know if and when it needs to be recharged.
An added benefit is that it can also keep a record of how your pain has been over the previous 24 hours (asking to rate your pain, how much it has interfered with sleep, how much it has interfered with activity levels as well as mood). It also has a feature which enables you to track sleeping patterns and activity levels all of which are excellent indicators if and how Quell is helping your pain.
My Personal Experience of Using Quell
To note, the Quell does not work right away for everyone, and sometimes it can take weeks of use until you start feeling the full benefits of the device. However, after hours of wearing the Quell, I began to feel a reduction in the severe pain I had been experiencing during that time.
It is not a magic cure and pain is still a constant aspect of my everyday life. There are still days, however, when I am in agony due to neuropathic pain but it helps to take the edge off the pain, and the Quell is now a permanent feature in my pain management toolbox. When you have been in constant pain as long as I have even a little relief is welcome.
I have found that the Quell has been much more successful in alleviating the joint pain I have been experiencing in my knees. It is not a pain we know the reason for, although I suspect it is as a result of all the falls I have had over the years, as I often fall onto my knees. If for whatever reason, I am not able to use the Quell, I notice that the pain in both knees exacerbates.
The first night have I started using the Quell; I decided to wear the device overnight to track my sleep, especially since pain has a significant impact on my ability to sleep, sometimes only managing a couple of hours. So, imagine my surprise when I checked the app and found that I managed 8 hours and 24 minutes of precious sleep!; more amazing since I was also sleeping in a strange bed.
At first, I was sceptical in wearing the device, as I often wear slim-leg jeggings, and wondered whether I would even be able to pull them up over the device. But this proved not be an issue at all as the Quell is slim-lined in design.
Then I worried that everyone will notice this strange looking device strapped to my leg, leading to many questions about what it was and why I was wearing it. Living with an illness and subsequent disability that has become more visible, I get asked a lot of questions. But we are all more than our illness and disabilities, and therefore wish that people see beyond our physical limitations. However, as the device is slim it was less noticeable than I had anticipated and during the month I have worn it, nobody has seemed to notice the device strapped to my leg.
The only problem I encountered was when having to swap the electrode to the other leg, allowing breathing room for my skin, which proved difficult as I was out all day on trips and I was wearing my usual slim-leg jeggings.
Another positive of the Quell is for its incredible battery life. Considering that I am using it for the majority of the day, and overnight, the battery lasted for around a week. The Quell came with a charger adapter and charger cable and has only taken approximately 2 hours to recharge.
What does a Quell Session feel like?
It doesn’t hurt at all and just feels like a vibrating and tingling sensation on your leg. With my neurological condition, I also experience constant trembling feelings and have found that the vibrations and tingling reactions the device produces do, in fact, worsen the trembling which is unnerving when walking while out of the house. Most people report forgetting they have it on but because of this, this is a rare occurrence for me.
I have also found that as someone who suffers a lot of falls due to my neurological condition, I have had issues with accidental disconnections with the Quell device, and have needed to excuse myself to the bathroom to reconnect the device to the electrodes and to resume a therapy session.
Accidental disconnections is also a regular occurrence when I wear the Quell overnight. Many times I have discovered the device has failed to record the length of time I have spent asleep as during the night as the Quell has disconnected (although I am one of those persons who is forever tossing and turning!)
Although the Quell is no cure for the constant pain, I experience I have found I have been able to do more than I would otherwise. During our time away, I found that I was able to walk further and do more than I was anticipating before leaving for our trip. Also, I have noticed that I have been able to increase the time spent on the bike at the gym. Admittedly, I have experienced payback of pain afterwards, but it hasn’t been as bad before using the Quell.
Cost of the Quell
The main drawback to the device is the price. At $249 (around £197) it is an investment. However, the company does offer a 60-day money back guarantee, so you are able to recuperate the cost if the product isn’t suitable or if it just doesn’t work out for you.
There are also additional costs to consider, as previously mentioned the electrodes need to be replaced every two weeks; for a month’s supply, it costs $29.95. With the starter kit, I was sent a one month supply of the standard electrodes and a month supply of their new sport electrodes which are designed to absorb moisture so are perfect for those who exercise regularly or play sports. I have found that the sport electrodes do last much longer than the regular electrode.
I found that the blue gel on the regular electrode became tatty quite quickly, although they still have lasted the full two weeks before needing to be replaced. Admittedly, to save further cost, I have pushed one to three weeks of use. Although I wouldn’t recommend it as the Quell felt like a painful stinging sensation, instead of the usual buzzing feeling, and was probably because the electrode became worn out.
The band also gets worn and stretched quite quickly, and the velcro loses its strength, and sometime in the future will need to be replaced, which is yet another cost!
Despite the shortcomings that I have experienced with using the Quell, I still think that the Quell is well worth it; it has become my favourite tool to help manage my chronic pain. If someone were to ask my opinion on the Quell, I would have no hesitations in recommending it for someone living with chronic pain. Quell offers a drug-free approach to pain management, which I appreciate as I often have stomach cramps after taking pain medication.
Like with anything, I know that it would not help everyone, but with the 60-day money back guarantee, it’s definitely worth trying.
Mindfulness helps to change the way you think and feel about your experiences, especially stressful situations. It involves paying attention to your thoughts and feelings in order to become more aware of them, less enmeshed in them, and better able to manage them.
Throughout the course, we learnt about the principles of mindfulness; specifically the triad of awareness, acceptance and non-judgement that the technique is based upon. Mindfulness teaches us to be focused and aware of the present moment, to acknowledge and accept our feelings without judgement or battling against them, to be better able to embrace them and ultimately let them go.
As the course was facilitated by Mental Health Services, the sessions were focused on the technique being used for anxiety and depression; our negative thoughts were described as being like trains, and when suffering from anxiety we enter the train letting those negative thoughts circumvent our brain. Mindfulness, however, teaches us to stay on the platform, but allow the trains to pass without getting on. Such a brilliant and simple metaphor to explain what mindfulness is and its function.
As the course progressed, I began to realise that the technique could not only be used for anxiety management but also help with the stress that living with a long-term health condition can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now. This is supported by much research which has shown that patients with chronic conditions reported feeling calmer, better equipped to deal with illness during times of stress and reported higher levels of well-being after incorporating mindfulness into their daily routine.
After starting the mindfulness and relating it to my life with a neurological condition, I came to realise how little I have actually accepted my illness. When we are mindful, we give our full attention to whatever is happening in the present, and without changing the narrative and judgement of our thoughts and feelings. Acceptance, in essence, means acknowledging that of what we have no control of; accepting life as it is at this exact moment.
While in the midst of excruciating and debilitating symptoms, however, it is difficult not to judge – ourselves, for our perceived weakness or our failing bodies which cause these symptoms, to begin with. Nor do we as patients sit there without attempting to change our current experience – we try medications, heat/ice packs, warm baths, anything to try and ease the symptoms that are consistently bothering us.
Often I feel at war with my body when my symptoms are severe; I curse, hating my weak legs and the other symptoms giving me grief, wishing that at that time I was someone else, had someone else’s body. I worry about the implications of living with a long-term health condition, such as worrying about the future and as a result, my head becomes permeated with worst case scenarios. So perhaps I hadn’t reached acceptance as I thought.
Mindfulness in many ways somewhat resembles autumn (or fall). It is said that autumn is a beautiful reminder what a relief it is to let things go that we no longer need, or does not serve us any purpose. As trees shed their dead leaves during the season; mindfulness allows us to let go of any negative thoughts which don’t help us and only allows us to get stuck in the depths of despair and hopelessness.
Mindfulness instead teaches us to focus on the present; accept our illness and the way its symptoms make us feel allowing these thoughts and feelings to fall into the background enabling us to focus on the positives. For example, instead of focusing on the pain in my legs, I allow myself to enjoy the feel of the sun on my face or savour the taste of hot chocolate (my favourite Autumn/Winter indulgence!).
I am beginning to incorporate mindfulness during my daily routine, alongside the usual practices such as taking medications and journaling. It is not, unfortunately, a cure for the symptoms associated with my neurological condition, they still exist, but it is a coping strategy for times when everything feels out of my control (which is a lot!). There are days when I find it difficult, but like anything, it can take practice to perfect the technique.
Mindfulness I have realised can be a mechanism to help find the light, during the darkest of days.
Useful Reading about Mindfulness and specifically its use to help chronic pain and chronic illness:
Living Well With Pain and Illness: Using mindfulness to free yourself from suffering by Vidyamala Burch
How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch
I have usually talked about my experience of living with chronic pain in passing during the three hundred and fifty posts that I have previously written. However, today I thought I would shed some light on what it is like living with chronic pain from my own personal experience.
Living with chronic pain is like attempting to function through a torrential storm. A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.
The excruciating pain is limited to my upper and lower limbs, although the pain in my legs is often much worse. The pain is unimaginable; a crushing sensation, as if they are leg caught in a vice which is only getting tighter and tighter. Every step hurts, each step bringing stinging tears to the eyes.
At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.
It is crippling and unrelenting causing a massive red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.
Pain consumes everything; a storm that is so powerful and savage causing flash floods. Rough waves pulling at the body, dragging you under, consuming you. And living with constant pain feels like that, it drags you under to the depths of despair. It is all-consuming and relentless.
Living with constant pain is exhausting.
If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause. Dealing with pain every day is draining, each night laying there all alone with nothing but the pain for company is mentally exhausting. The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights. In the chronic illness community, we have a word for this – painsomnia.
Often, as the lack of sleep overwhelms everything else, a nap becomes necessary. But no matter how much sleep we, it is never enough. Sleep never eradicates fatigue. A vicious cycle of sleeping during the day and not being able to sleep at night which is seemingly impossible to break.
Each morning promises to be a clean slate, a new beginning of hope and promise but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.
It is a constant companion, one who dictates how our day will go and what we can do with our day. We speculate when the next ‘storm’ will impact, although very often these waves continuously crash, pulling us under, our bodies being slammed from every side by the violent waters.
The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.
Pain can make us feel incredibly lonely.
Pain is invisible, and as such nobody ever knows just how much pain we are in, we are expected to participate in society even when we are consumed with the pain. We don’t want to say no or cancel plans we have made, but it feels as if we are being held hostage by the pain and as such we are forced to stay at home, clinging to a raft trying not to be sucked under and sink. Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.
Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company. We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.
There are times when the pain wins; days when we are worn down by the pain. Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain. Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass in sight to help you find your way.
Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort. Despite the constant affliction of pain we continue to hope for better tomorrows. We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.
The storm of living with chronic pain cannot be stopped, it is a storm that can only be weathered. The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging. We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain. Techniques which include strategies such as pacing, relaxation skills, and diet and exercise.
And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with baited breath for the next storm to arrive…
One of my favourite chronic illness bloggers, Sheryl from ‘A Chronic Voice’ has started a link up party! These parties are a monthly get together for any bloggers who live with or have experience with a chronic illness. These will provide opportunities to ‘meet,’ share thoughts, information and learn from one another.
To gain more information about these parties and information on how to participate then you can visit Sheryl’s original post here.
The prompts for this month are:
Missing: My late dog, Honey
I’m not going to lie, but I have been struggling these past couples of months and been spending more time alone in the house. And it’s during these times that I have been really missing the company of our late dog, Honey. Although she may have been pretty useless if something happened to me such as a fall (which have also been increasing) however the mere presence of having her around was comforting. Of course, I also miss her copious amounts of hugs and kisses which never failed to make a bad day better.
In my last post, I wrote about my love of books and reading. As the pain and relentless trembling in the legs have worsened recently, I appreciate the wonderful world of books for allowing me to escape from the monotony of chronic pain and the other symptoms that have taken permanent residence in my everyday life. These books, the many that I have read so far this year has taken to many different places that my body is physically unable to go. It has proven to be a great distraction for me on the bad days, which unfortunately have been many. And for that, I have been so very grateful.
Striving: Striving for Progress
As I have already mentioned, things have been challenging in regards to my health which is really frustrating especially as I take steps to try and improve it – I go to a local gym in the attempts to strengthen my muscles (which hasn’t happened). Or at the least ensure that the weakness does not get any worse. I also ensure that I spend time everyday to complete the vestibular rehabilitation exercises that I was given at the hospital to help with the dizziness and vertigo as well as the physiotherapy exercises to improve the functioning in my legs. So far, they have been unsuccessful, but still, I persevere in the hopes of improving my situation. Like all of us, I am never going to achieve perfection, but I hope one day soon I manage to attain progress and improvement.
Releasing: Positive Thoughts
As a writer myself, I love words, and I love finding new and uplifting quotes to decorate my bedroom to raise my spirits and inspire me on my bad days, and those days I am stuck in bed. I also own several pieces of jewellery that have a positive quote or mantra that I can wear and remind myself during difficult times. I release these positive thoughts to elevate my mood. I have even found some cards that have positive and inspiring quotes on them that I have even used to send to others also living with chronic illness and disabilities (such as the fun and brilliant #spooniepost) to help remind them of everything that is positive during their own struggles.
Eating: Homemade Pizza
In our attempts to eat healthier, my Mum and I have been spending some time experimenting with some of the recipes from the beautiful cookbook ‘Cook Happy, Cook Healthy‘ by Fearne Cotton. Our favourite meal from this book has been the Healthy Homemade Pizza which uses spelt flour instead of regular white flour due to its nutritious qualities. I love this, as it’s surprisingly easy to make and it doesn’t leave your stomach feeling heavy and stodgy afterward, which I often get after indulging in a takeaway pizza. It has also been enjoyable to make (despite all the mess!), and I have felt incredibly accomplished while enjoying the fruits of our labour!
In a recent post, I wrote about my passion for television shows and the distraction that they provide from the persistent chronic pain that has been ravaging throughout my legs recently. In this post, I also shared my favourite box sets to watch when incapacitated by chronic pain or the many other symptoms that occur when living with a neurological condition.
Yes, television and films are one of my primary passions. However, it is not my only passion. My first love, and one which has followed me throughout my life since childhood is reading. Books are something that I have always collected, amassing goodness knows how many over the years and are found all over my home, especially in my bedroom! Many books I donate to charity shops or pass them along to those whom I know would love it as much as I did, but still, I amass so many books!
Like many, I hate getting lost especially in unfamiliar places. But I can spend many hours perusing the shelves of libraries or bookshops that times seems to slip away from me, and wouldn’t notice if I did get lost, or lost sight of my companion.
As a young child as much as my Mum tried to get to engage in other activities such as colouring or puzzles, for example, I quickly became bored, and I once turned to the safety and magic that books provided. Many of the photographs of me as a young child, I can be seen clutching a book, losing myself in the words and pictures on the page. As we have now established my condition whether genetic or due to another organic cause, was from birth, I wonder if I retreated into books as a way of dealing with symptoms such as pain that I could not yet verbalise.
Nearly 30 years later and I am continuing to use books and reading as means of distraction from the effects of chronic illness. Recently I came across a quote on Pinterest that read ‘Reading gives us somewhere to go when we have to stay where we are.’ And this quote is incredibly apt for someone living with a chronic illness as there are many times in which I I am incapacitated by one or more of the many symptoms that come with living with this neurological condition that I live with day in and day out. Weak legs that can barely carry me into the next room forces me to lie on my bed, contained within the same four walls that I am compelled to spend most of my time anyway. Days like these I am unable to go anywhere or do anything, and so, I find solace in the written word.
Escapism. A place where I can forget my predicament, and everything that chronic illness has given and taken away from me. Escapism from the vast number of symptoms that are plaguing me. But books are not only able to take you away from everything that is bothering you, but they can also take you places.
Books are like a unique magic carpet ride, transporting you to far away places, places you’ve always wanted to go and experience but which current circumstances prevent you from doing so. After seeing many pictures and heard stories from those who have been there, Prague has been on my ‘bucket list’ of places that I would love to visit some day. However, as I’m unable to fly due or cope with large airports, this neurological condition has prevented me from ticking it off my list.
Last year, I read the beautiful ‘A Year and a Day’ from author Isabelle Broom in which a large chunk of the story takes place in this very city. The way Isabelle writes, and the exquisite level of detail with which she describes Prague and its unique landmarks it made me feel that I had been there and experienced the city for myself. OK, so it may not be like experiencing travelling firsthand, but when circumstances prevent you from being able to move from where you are, books are the next best thing. In fact, all of Broom’s books give you major wanderlust as each novel has taken place in a different, exotic locations, and each place beautifully and meticulously described, making you want to grab your passport and book flights immediately.
And it’s not only places that exist now that books allow you to visit; historical fiction allows you to visit and experience places that existed many years ago (or at least what it was like from the author’s perspective). But very often, and for me anyway I want to be uplifted. A story to remind me of the beauty and wonder of the world; to comfort and reassure myself that despite chronic pain there is still hope and much to be grateful for.
In books, we can be whoever we want to be. We don’t have to sick, confined to bed and in constant pain. We can be the hero, the warrior, the woman who eventually finds love and her happily ever after. Getting lost in these worlds, we no longer feel the pain that was slowly dragging us down into a dark abyss. We no longer have to fight against our bodies. These books that are on my bedside table allows me to experience a snapshot of normality; one in which I am independent, confident. No longer a burden on others.
Books are a magical portal allowing us to escape from our lives. Taking us away from this world of sickness – time spent in bed, mobility aids, hospital appointments, and medications. Books can allow us to find out who we wish we could be. For many, reading is merely a hobby, a way of filling time, or for light entertainment. But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness there is magic and power in those printed words.
Does anyone else love to read? What books do you enjoy; are there any that provide comfort and sanctuary away from life with chronic illness?
And let me know of any great book recommendations that you have.
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Thank you so much to Cheyanne, a lovely young woman who blogs at Hospital Princess in which she shares her personal journey living with Ehlers Danlos Syndrome and its other comorbid conditions including dysautonomia and gastroparesis for tagging and nominating me.
What is the Sunshine Blogger Award?
It is a nomination given to bloggers by bloggers. If someone nominates you, it means you’re one of 11 people whom they find inspiring and brings sunshine into the lives of your readers. If you decide to continue to tradition, then follow these simple rules!
Rules for the ‘Sunshine Blogger Award’:
Thank the blogger who nominated you and link back to their blog;
Answer the 11 questions the blogger asked you;
Nominate 11 bloggers to receive this award and ask them 11 new questions; and
List the rules and display the Sunshine Blogger Award in your post and/or on your site
Questions and Answers
Here’s what The Hospital Princess asked me, and my answers to them:
What inspired you to start blogging? It was a remark by an online friend who also at the time was blogging. At the time I didn’t have a concrete diagnosis, but we both suffered from chronic dizziness and after reading some of my personal writing and knowing my story living with an undiagnosed condition she suggested creating my own blog to share my journey and to help myself and others going through a similar experience.
Instagram or Twitter? Why? I would have to choose Twitter; I also have an Instagram account but much more active on Twitter mainly because I hate having my picture taken, always highly critical of my looks. I also feel that I am much more eloquent with words!
If you could choose another “niche” for your blog, what would it be? It would definitely have to be writing about books as I am an avid reader. I have so many books but still always find myself buying more as I discover new and exciting authors and titles within the bookshops that I frequently inhabit.
You can travel back in time. What age would you be? I would travel back in time to when I was 16 and going through a tough time at school, suffering from depression. I would give myself a big hug and reassure myself that it will be OK and that these feelings will pass.
Professionally, what are your future goals? I have no idea. At the moment with my health, I am just trying to get through each day. But I would like to do more writing, either for online platforms or even get published in a magazine.
Who is the biggest supporter of your blog and life in general? How do they keep you motivated? Of course, my biggest supporters will always be my parents. But outside of my immediate family, it would be my best friend Aisha who makes an effort, despite her own health struggles to read my writing and my blog whenever I publish something new and has even proofread my writing. Her support and encouragement always keep me motivated!
What is your favourite song lyrics? Why? I find lyrics in the song ‘Do You Hear the People Sing’ from the musical Les Miserables particularly inspiring and motivating. ‘Even the darkest night will end, And the sun will rise’ is a beautiful reminder that nothing in life is permanent and the pain or the negative feelings we are currently experiencing will pass just as the night ends giving way to a new day.
How do you promote your blog? I promote my blog through my social media channels – Twitter, Facebook and Instagram. I also am members of various groups on Facebook to help share and promote my new blog posts.
Most embarrassing moment? I once fell off a stage as I went up to collect an award which was very embarrassing, especially as there is still evidence somewhere as my parents were recording it!
What do you dislike the most about blogging? It’s not so much about blogging per se, but it can be frustrating when you take the time to share the blog posts of fellow bloggers, but they don’t return the favour. It doesn’t happen a lot, but some bloggers don’t even thank you which is frustrating as I think especially within the chronic illness community we should all support each other.
How have you changed as a person since starting your blog? Well, I’ve certainly gained more perspective and insight into my experiences with living with a long-term health condition, have become more eloquent when describing my symptoms with doctors and other consultants, which may have helped in getting answers and culminating in a diagnosis. I have grown in confidence as a writer and as a person.
For the past few weeks, I have unfortunately been experiencing a severe flare in symptoms. Although the symptoms I live with are constant, however, I experience blocks of time in which these symptoms worsen causing much pain and suffering.
Pain, trembling, dizziness and especially fatigue have all been particularly acute of late. Often I have been unable to do much at all, with the pain and trembling in the legs shackling me to my bed due to difficulties with getting around, even in the house. Crippling fatigue has also confined me to rest in bed on numerous occasions especially after being out of the house or doing chores around the house.
And it’s in these moments, being incapacitated by the illness that I am unable to do much more than just lie on my bed and entertain myself with a light or comforting book. But more often than not, however, I have been distracting my mind from the pain and other symptoms with a box-set binge of one of my favourite television programmes.
In this post, I thought I would share some of my favourite box sets that have recently helped me into a chronically (ill) induced boxset binge.
Anyone who knows me will know that I am a huge fan of procedural crime dramas, and Bones has to be one of my all-time favourite shows in this genre.
‘Bones’ centres around the relationship between forensic anthropologist Dr Temperence Brennan and Special Agent Seeley Booth of the FBI whom together combine their skill and expertise to solve murders using evidence recovered from dead bodies. “Bones” is the nickname given to Dr Brennan who heads up the team of forensic scientists of the Jeffersonian Institue (based upon the real-life Smithsonian Institue). As the show is based on the character created by real-life forensic anthropologist Kathy Reichs (and who is also an executive producer on the TV series) the science and techniques used adds to the show’s realism and authenticity. Alongside murder inquiries, the show also explores the relationships and private lives of the characters.
Not only is the science of the show interesting and compelling but the writers of the show beautifully write engaging and relatable characters whom you can’t help but fall in love with, especially the show’s protagonist ‘Bones’ whose directness and clumsy demeanour makes her both hilarious and endearing to watch. Also, what I love about the show is its ability to inject humour seamlessly alongside the horror and gore of its depictions of its murders and dead bodies.
“Jane Doe” wakes up stuffed inside a duffel bag in the middle of Times Square, naked, unaware of her own identity and covered in strange tattoos covering most of her body. And it’s this enigmatic twist that makes it so different from any other police drama before or since.
The FBI, headed by Special Agent Kurt Weller, whose name also appears on the back of this mysterious tattooed woman, realises the tattoos are much like a treasure map and when decoded reveals clues to crimes and instances of government corruption. Also while trying to discover Jane Doe’s real identity, and who sent her to the FBI and why.
If you love dramas that make you think, then this is one to put on your list. Once you start to watch you cannot help be instantly intrigued with these beautiful and ornate and tattoos as well as the methods used to uncover the messages behind them. As the series develops, the momentum builds closer towards a shocking and dramatic conclusion, raising more questions than it actually answered, and brilliantly introducing new avenues for future series to explore. Everything about this series really impressed me, but the standout performance came from Jaimie Alexander as ‘Jane Doe’ who although excelled at the action stunts it was the vulnerability she showed portraying a woman whose entire identity had been erased that made it such a compelling watch. A series I could happily watch again and again!
I wouldn’t say that I am a huge fan of action dramas, but Strike Back has to be the one exception and one I can happily watch over and over again. I’ve even been known to have come to the end of the entire series of the show and then immediately go back and watch it all over again. The original series of Strike Back was adapted from a novel written by former soldier Chris Ryan and starred Richard Armitage. John Porter is a disgraced soldier recruited by a secret branch of the British military to travel around the globe in the attempt to stop major global threats while his boss does his best to cover up a mistake from his past. It was a solid series, however, Strike Back really came into its own during its second outing with the introduction of soldiers, Sgt Scott and Sgt Stonebridge, two leads who share amazing chemistry, and rival any of the best television or film comedy duos. They are engaging, and a delight to watch, and the banter they share is really what makes the show so fun and entertaining. The one-liners between the two are hilarious, and as it’s a show I watch so of, I am even able to quote them! But be warned, throughout all of the series there are many instances of explicit language as well as gratuitous sex and nudity. Certainly not something I will watch in front of my Dad!
But what also makes the show so brilliant is the high octane drama and action. The stunts are both impressive, and looks incredibly realistic and what the show will be most remembered for. Although the action is what mainly drives the show, I also enjoyed the emotionally driven storylines, examining the tortured psyches of the soldiers and the moral quandaries that they are forced to confront in their line of work. It was great to love a show that seemed fresh and new at the beginning of each new series, with ever evolving characters and brilliantly complex storylines, hunting new enemies that threaten not only the UK but it’s political and military allies. The episodes are so intense and exciting it’s hard not to get carried away and watch several episodes in one sitting!
Gavin and Stacey
Written by friends Ruth Jones and now very famous James Corden, Gavin and Stacey tells the story of the eponymous characters; one a boy living with his parent in Essex and Stacey, a young woman from Barry, a town not very far from where I live! They navigate their love affair alongside their best friends Nessa and Smithy, who although they seemingly hate each they keep sharing romantic trysts themselves!
The show is absolutely hilarious, and it never fails to make me belly-laugh no matter how many times I have watched the episodes! A great boxset to watch when feeling down, feeling the effects of living with a neurological condition.
Other Notable Mentions:
Grey’s Anatomy – it’s fun, addictive and beautifully written with strong and relatable characters that despite their flaws you can’t help but love
Criminal Minds – as someone with a psychology degree, I find their abilities to get inside the minds of serial killers fascinating
Ghost Whisperer – Jennifer Love Hewitt is absolutely compelling to watch as reluctant medium Melinda Gordon. Each episode is so emotional to watch and never feels to leave you with tears in your eyes
Designated Survivor (on Netflix UK) – with elements of 24 and The West Wing, this show is undeniably intriguing and also complicated at times. Tom Kirkland (played by Keifer Sutherland) on the eve of the State of the Union becomes the President of the United States after a catastrophic explosion claims the lives of the President and everyone in his line of succession. It’s absolutely addictive, and all 21 episodes are now immediately at your fingertips making it perfect binge-worthy material.
I always love to discover new box sets to watch on those days which leave me incapacitated by my symptoms so I would love to hear your favourite box sets and any recommendations on what to watch next!