The Benefits of a Spa Day for Those With Chronic Illness

After Mum and I enjoyed a luxurious spa break for my 30th birthday two years ago, we decided that every few months, or whenever we had some spare time we would book a spa day for the both of us to enjoy together.  Unfortunately, due to unforeseen circumstances, we have been unable to enjoy a spa day together for almost a year, but with Mum having some time off work and my impending birthday we thought that it was time for both of us to enjoy some much-needed R and R.

Excitement and anticipation soon start after phoning our local spa, for a day pass which includes one of their luxurious treatments and a heap of other benefits including full use of the spa and leisure facilities, two-course lunch buffet and complimentary towel, robe and slippers.

A relaxing spa day is a sublime treat for both myself and the person with whom I’m going, something to look forward to beyond the daily life of managing unpleasant symptoms like chronic pain.

However, not only is a spa day something lovely to look forward to but as someone living with chronic illness, I have found that I benefit immensely from it.

And I think a spa day would be beneficial for those living with chronic illness; and here are some of the reasons why:

ALLOWS YOU TO SPEND QUALITY TIME WITH LOVED ONES

Before my symptoms became disabling, my Mum and I loved nothing better than to travel to Cardiff and spend the day together for some retail therapy, and perhaps even take the opportunity to eat out.

However, now as my mobility has worsened, my legs so weak that I am unable to stand or walk for very long without them giving way.  These days out together are no longer possible, not only because of the debilitating physical symptoms but also due to energy limitations.  I just don’t have the energy to do these type of high-energy activities anymore.  Not without paying a hefty price afterward, such as a significant increase in the severity of the symptoms I already have to endure.

Like many of us living with chronic illness, it means that I have to miss out on social gatherings with friends or family which is something that is one of the most upsetting and frustrating things about living with a long-term health condition.  However, a spa day allows you to spend quality time with a friend or loved one that is thoroughly relaxing and low-energy, perfect for those of us with chronic illness.

BEING ABLE TO UNWIND, DESTRESS AND INDULGE IN SELF-CARE

Like many others living with chronic illness, the condition and its constant and unrelenting symptoms cause me stress.  And never more so when I am experiencing a severe flare, much as I have done recently.  By going on a spa day, however, gave me the opportunity to escape this day-to-day stresses of living with chronic illness, and to unwind and relax.  As all of us are aware, stress can often exacerbate our symptoms; by going on a spa day, it allows you the opportunity to focus on you and your needs.

Like osmosis, the calm and relaxing atmosphere of the spa itself seeps into my body making me calm and relaxed also despite any pain or discomfort I’m experiencing.  Hell, I become so relaxed that I end up catching on any missed sleep in one of the Relaxation Zones. Bliss!

THE TREATMENTS ON OFFER CAN HELP REDUCE CHRONIC PAIN 

There are a variety of treatments and massages on offer in spas like the one I frequent.  For those who can tolerate touch, as some suffering from allodynia would not benefit from such treatments.  One of my favourite treatments is the aromatherapy massage, but the hot stone massage may also be beneficial for those suffering from chronic pain as research has found that the therapy eases muscle stiffness, increases circulation and metabolism and also increases blood flow throughout the body as the hot stones help to expand blood vessels.

Furthermore, massages have also been found to release the same ‘feel-good’ endorphins that you get from working out.  The release of endorphins acts as a natural pain reliever.  The more your body produces these endorphins, the quicker it learns how to release them.  Therefore, regular massage therapy helps to stop the buildup of toxic blockages that hinder the flow of oxygen around the body causing pain and inflammation and to also help the body’s response to it.

Aromatherapy as well as having the same benefits as listed above is also said to ease headaches, improve sleeping problems, lowers feeling of anxiety and improves mood.  The practitioner can tailor the aromatherapy oils depending on you and your symptoms.  During a previous massage, peppermint oil was used on my body, including my stomach and really helped ease nausea I experience as a side effect of the medications that I take.

I also love having a facial, which is just as relaxing as any of the other treatments already mentioned, and afterward, my skin is glowing making me look healthy and radiant, and when I look good, I also feel good.

THE HEALTH BENEFITS OF THE OTHER FACILITIES ON OFFER 

As well as delivering ultimate pampering treatment, most spas also have jacuzzis, saunas, and steam rooms to use during your day.  Jacuzzi’s are excellent for those like myself who suffer from neurological conditions as the warm water decreases joint stiffness, normalises muscle tone, as well as promoting muscle relaxation all helping to relieve pain. I love spending time in the spa’s jacuzzi, and feel relaxed and rejuvenated doing so, as well as experiencing a reduction in the amount of pain I am experiencing.  I find it so beneficial that it’s difficult getting me out of there!

There are also many benefits of using saunas and steam rooms.  Saunas, for example, are great for detox, as sweating is one of the best ways to remove toxins from the body.

Saunas and steam rooms are although not suitable if suffering from heat intolerance which many suffering from neurological conditions do.  However, even a few minutes in the steam room or sauna can be beneficial as in addition to detoxing, they may also help to reduce inflammation and pain.

Furthermore, it’s important to reiterate that spending time in hot water and facilities such and saunas and steam rooms can be as good as exercise.  Great news for those who find exercise difficult because of their condition, but is still important to pace yourself especially for those who struggle with fatigue.  Also, if you have high blood pressure than you need to consult a medical professional before using such facilities as it may be unsuitable.

A DAY WITH NO PRESSURES. A DAY OF NORMALITY 

We all have pressures in our lives whether it comes from work, family, or friends.  When living with chronic illness, we may often feel pressure to do things that we might not feel physically able to do, others not understanding why we can’t because we look healthy on the outside.  Them not understanding how we can still be in pain, or feel so fatigued.

A significant advantage of a spa day is that there are no pressures from others or any need to places any burden on ourselves to do this or that because we feel we should be doing something than resting and looking ourselves. On these days, there is nothing to do but care for ourselves, listen to our bodies and instead do what we need to for us.  A day not continually checking social media, and worrying about what is going on around us.  A day just for us.

At the spa, I feel completely safe and at ease in the environment, which is not always the case because of my neurological condition.  But there, I can take everything at my own pace, even being left alone in one of the relaxation areas while my companion goes to another part to do what they want. It’s, in fact, a spa day is one in which I almost feel ‘normal,’ a day which I am not defined by the limitations of my condition. A day with no ‘I can’t’ and being stopped by the symptoms that I endure because of said condition.  All there is to do is lie back, relax and enjoy!

There are just a few of the many reasons why a spa day can benefit for those living with chronic illness.  I always come away feeling tired, but still incredibly relaxed, happy and even in less pain.

I definitely feel and enjoy the benefits of a spa day and would recommend it to anyone.  Plus, it provides a fun and relaxed day out, that I can actually enjoy and feel comfortable in my surroundings, and allows me time to spend with Mum away from home. I cannot wait until our next day whenever that will be!

Have you tried a spa day?  What did you think?

Let me know in the comment box below or let me know via social media!

 

 

 

 

 

 

 

A Month of Life & Chronic Illness

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:

• Adapting
• Practicing
• Realising
• Celebrating
• Inviting

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.

Acceptance is a journey and not the destination.

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.

The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

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.

Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

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.

2018: A Year to Cultivate Resilience

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!

What is going to be your ‘one word’ of the year?

Product Review: Quell Wearable Pain Relief Technology

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!

How the Quell looks on my leg!

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.

The App

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 Dashboard which controls the device

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.

A great night’s sleep has been a welcome side effect from using the Quell.

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.

Even wearing slim-leg jeggings, the Quell is hardly noticeable!

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!

Final Thoughts 

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.

Mindful Realisations

Recently, I finished a six-week Mindfulness Course.  I

I was referred to the course by a healthcare professional to help with the anxiety that I have lived with for many years and is a consequence of living with a long-term neurological condition.

Everyday Mindfulness, describes it as:

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.

Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them

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!).

Mindfulness is much like autumn reminding us of the benefits of letting go

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

 

 

Surviving the Storm of Chronic Pain

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.

Pain is relentless and all-consuming

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.

Painsomnia can last all night and one in which you will try anything to distract you from the pain which usually consists of social media and Netflix

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.

Due to constant and debilitating pain, a lot of time is usually spent alone

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.

Despite living with pain and feeling like we live in darkness when living with a flare we still look and see the beauty in life

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…

After surviving the ‘storm’ of a pain flare, we are left wondering when the next one will arrive…

 

The Magic of Reading

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!

The problem of being a massive bookworm!

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.

Reading can give you real wanderlust!

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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The Sunshine Blogger Award

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:

1. 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.
2. 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!
3. 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.
4. 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.
5. 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.
6. 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!
7. 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.
8. 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.
9. 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!
10. 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.
11. 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.

My nominees for the ‘Sunshine Blogger Award’:

1. Emmie from ‘Illness to Wellness: A Journey‘
2. Heather from ‘Dinsoaurs, Donkeys and MS‘
3. Chiara from ‘The Millennial Patient‘
4. Amy from ‘Destined2Roam‘
5. Ash from ‘Finding Rainbows in The Dark‘
6. Em from ‘That Silver Spoonie‘
7. Lara from ‘Mummy Seeing Double‘
8. Jen from ‘Tripping Through Treacle‘
9. Rebecca from ‘A Punk with MS‘
10. Caroline from ‘PoTS and Spoons‘
11. Sarah from ‘A Life Less Physical‘

My List of 11 Questions: 

1. What inspires your blog posts? How do you come up with new things to write about?
2. If you had to choose just one social media platform to use for the rest of your life, which would you choose and why?
3. What fictional character do you most identify with and why?
4. If you could be one person from history, who you would choose? Why?
5. What has helped you reach acceptance in your journey with chronic illness? Or do you feel you have yet to reach acceptance?
6. My latest blog post is about my favourite box sets to binge-watch. What was the last show you binge-watched or are currently watching?
7. What lessons have you learnt from living with chronic illness?
8. What blogger or bloggers do you admire the most? What have you learnt from them?
9. Who gives you strength in your everyday life?
10. What are your biggest struggles in everyday life?
11. If you could accomplish anything in your future, what would it be?

Thank you once again to Cheyanne for the nomination! It’s such an honour and so lovely that you thought of me! 🙂

A Chronically (Ill) Induced Boxset Binge

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.

Bones

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.

Blindspot

“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!

Strike Back

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!

Leave your suggestions in the comments below!

 

 

 

A Diagnosis Matters…

Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.

Living without a diagnosis is very much like life in the dark

After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark.  You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.”  Then there is the usual carousel of different doctors from different specialities, some you may have seen before but which only yielded more questions.

In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.

Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.

Having a diagnosis means living with many unanswered questions

I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition.  In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.

And this is true, of course.

Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything.  The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed.  Life is really the same regardless of whether or not we have a diagnosis.

But often a diagnosis matters.  Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label.  They provide answers.  Validation.  Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.

A clinical diagnosis almost acts like a light sabre against those forces that doubted the existence of the symptoms ruling your body and life.

We need to know exactly what we are dealing with.  To have some idea of what the future holds for us instead of living with unknowns and what ifs.  A diagnosis matters.

It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill.  Getting a diagnosis can lift a weight off your shoulders

A diagnosis can lead to answers.  It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.

It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition.  A diagnosis matters.

A diagnosis can lead to treatment options where there were none before.  And it’s these treatment options that can provide hope and a chance at a better quality of life.  A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance.  A diagnosis matters.

Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to

For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms since young childhood, some possibly since birth.  For years, I have seen so many different specialists, sometimes more than once.  Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement.  Years with no name or explanation for what I was experiencing.  Years of disappointment and hopelessness after test after test came back normal.

Last year I was referred to see a specialist neurological consultant in London and which I attended last month.  I admit I went to the appointment with not much expectation, after many years of disappointment I have learnt the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.

However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering.  After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.

Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in

He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing.  Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description.  Could it be that whatever condition I am suffering was determined before I was even born?  That the development of the symptoms was inevitable like me having blue eyes?

Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND.  Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.

Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo.  It is not uncommon for those living with chronic illness to experience more than one condition.  Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once.  Each symptom vying to be the centre of attention.

Having one or more diagnoses means juggling many symptoms, all of which compete for attention

In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.

So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope.  Hope that we are one step closer to an explanation for symptoms that have been with since a baby.  Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).

Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.

I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.