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Chronic Illness and Working

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Welcome to the fourteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

First Day on the Job: Working with a chronic illness can be a difficult balance.  What should you divulge, what should you hold back, and how do you balance it all?  Do you have advice for others?

 

Well, as most of my readers may know, I am unable to work with the current severity of symptoms.  The dizziness, trembling and pain in my legs, visual disturbances and the other plethora of symptoms that make their presence known on any given day is so bad that even keeping up with simple chores around the house is extremely difficult nevermind trying to hold down a job on top of it all. Obviously, the Department of Work and Pensions seem to also think that due to my condition that I am unable to work as I was placed in the Support Group category of the Employment and Support Allowance benefit.  At other times, I am stuck in bed, unable to leave it because of the overwhelming dizziness and weakness throughout my entire body, and especially my legs.  Also, making it difficult for me being enable to work is the fact that because of my condition I am unable to get out of the house without being unaccompanied by someone else; because of the severity of the dizziness and vertigo, as well as the bouts of vision loss that I have been experiencing.

Although I am not at fault that I am unable to work, it does not stop the guilt or shame that I feel for not being able to work.  After all, I went to University in the hopes of gaining a degree enabling me to gain a good job in the area that I wanted to eventually work in.  I am constantly wish that my body would fix itself and give me the chance to work.  I really feel for other chronically ill patients who have no other choice but to fight through their debilitating symptoms and continue working, and it must be such a dilemma for them whether or not to divulge information regarding their chronic health condition to their employer, especially due to the recession.  However, for  patients who need to work it is important to note that it is unlawful for anyone to be sacked, made redundant, forced into early retirement or passed over for a job or promotion because of an illness or disability.

According to the NHS Choices website there are a number of benefits of informing employers of a chronic health condition including:

  • Making it easier to get time off work for check-ups and treatment during office hours
  • Employers has a duty of responsibility to take reasonable steps for you to help you do your job
  • Employers and co-workers will know what to do if you have a medical emergency
  • You may even be eligible for more sick days than usual

However, how realistic is it for employers to make such allowances for employees with chronic health conditions when the recession is hitting everywhere hard and money is still very tight.  Unfortunately, the decision for whether or not to divulge a chronic health condition is not clear-cut and there are a lot of things to consider, but the final decision must be made by the patient themselves.

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The Evolution of a Patient

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Welcome to the thirteenth day of the National Health Blog Post Month Challenge.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Evolution: Write about how being a patient or caregiver has changed you.  How have your goals changed?  Have your values changed?

Patience; as a patient I have developed far more patience than I had before being a chronically ill patient.  In my opinion, patience is definitely a quality you need when becoming patient, especially when waiting often weeks or even months for hospital appointments, and for test results, and everything else that being a patient entails.  Although it is extremely frustrating having to wait so long for appointments and test results, I also think that having contact with other patients whether it is in real-life or via social media, can make this easier to bare as it makes you realise that you are not alone and able to support one another on the journey through being a chronically ill patient.

In addition, being a patient has also changed me in regards to knowing when to listen to my body.  Often, my chronic illness leaves my body very fatigued, and when this occurs  I know that I need a nap.  The consequences of not listening to my body can result in overwhelming weakness throughout my entire body as well as severe dizziness and vertigo, which can then result in being bed bound for a length of time.

Before being a chronically ill patient, I perhaps held too much faith in doctors; often seeing them through rose-tinted glasses and thinking that they are able to fix all the ailments that are presented to them.  However, after being a chronically ill patient myself, I have sadly had first hand experience in learning that often doctors are not able to cure every ailment and illness; I had to learn to accept that endless consultants were unable to cure or even help me.  I had to evolve as a person with a long-term health condition, and instead of relying on doctors to help me with my condition, I had to learn to rely on myself and learned to adapt and introduce my own coping strategies to help me cope with my health condition and new situation.  For example, recently I have learnt that mints really help with reducing the nausea that I experience and therefore as a result I know to always ensure that I have a pack in my bad when I go out.  In addition, as the dizziness has been particularly bad recently, I have learnt that wearing a hat with a brim helps somewhat as it blocks out the visual stimuli that I find bothersome and can precipitate an attack of vertigo or worsen the dizziness that I already have.

In terms of goals, they have changed considerably since my diagnosis in 2010.  I had thankfully, already achieved a major goal of mine in completing my University education and gaining a degree in Psychology.  However, other goals such as travelling, moving out of home and getting my first job had to be put on hold whilst my illness was bad and we were still searching for a diagnosis.  Now, that we have that diagnosis, and especially since last week’s hospital appointment which all but confirmed the dizziness as being neurological and being a lack of treatment or cure; as well as my current state of health then I am not sure whether I will achieve any of those goals that I so dreamed of years ago.   Perhaps I will given in time, although the goal posts may have to change slightly.  For example, I always had dreams of travelling to Italy, with friends, and although this dream is set to come true next year when I go on my cruise, I am not attending with friends but instead with parents as with my condition I will need looking after if and when flares occur during the holiday.

I am sure that my values have changed also; living with a chronic illness, you realise what really is important in life, and all those little mundane things that once seemed really important, don’t seem to all that important anymore.  I would like to think living with a long-term health condition and disability has made me more caring towards others and as a result am less judgemental and more tolerant towards others.

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Top 3 Tuesdays: Music to lift the spirits

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Welcome to the twelfth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Top Three Tuesdays: Name three songs that you can listen to that gets you out of a low point or lift your spirits 

 

The Overtones: 'Saturday Night at the Movies'
The Overtones: ‘Saturday Night at the Movies’

The first for my top 3 of songs to lift my spirits when living with chronic illness gets me down or my symptoms are particularly is not actually a song but, have instead chosen an entire album.  Last week, was a very tough week as my dizziness was extremely severe and was left unable to function but it was also the week that the new album by the group ‘The Overtones’ was out.  The album is entitled ‘Saturday Night at the Movies’ and as the title suggests it is an album composed of popular songs from films such as ‘The Blues Brothers’, ‘Dirty Dancing’, ‘Breakfast at Tiffany’s’ and ‘Pretty Woman’.  I instantly fell in love with listening to the album and despite the severity of the dizziness and how miserable it was making me feel, I found however that listening to the upbeat songs instantly lifted by spirits and my mood.  My particular favourite songs on the album to listen to, for lifting my spirits and making me feel happy are ‘Shake a Tail Feather’ ‘Do You Love Me?’, ‘The Bare Necessities/I Wanna Be Like You’ and ‘Don’t Worry Be Happy’.  An album that has out a smile on my face even through the darkest of hours.

What Doesn’t Kill You (Stronger) by Kelly Clarkson 

Again this is another uptempo track, which instantly lifts my mood anyway.  But in my opinion, this song makes a great soundtrack on an album designed especially for ‘spoonies’ as it is a reminder that although it may not always feel like it, especially when our chronic illnesses are bad we are still strong for living through all of it.  Although, it’s a song about a break-up after the end of relationship, it still applies in many different areas of life, including rising back up after a knock from living with a chronic illness.

Born This Way by Lady Gaga

This is by far my favourite Lady Gaga song.  It’s upbeat, fun and most of all the lyrics remind us that whatever makes us different from others, whether it’s sexuality, skin colour or in spoonies case living with a chronic illness then we should not be ashamed of who we are, and instead celebrate our uniqueness, because after all “we were born this way”.  In the past, perhaps long before I was diagnosed I was ashamed of my health problems, and the symptoms that I constantly had to live with, and this song just reminds me not to be, and just love myself for the person I am instead of the person that I wished I could be.

 

So, there are my Top 3 Music Playlist to lift my spirits on a bad day with chronic illness.  What are your go-to songs when you are going through a low point or need to listen to something that lifts your mood?  As ever would love to hear your comments and views so please comment below….

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Chronic Illness can ruin plans and routines…

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Welcome to the eleventh day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Veteran’s Day: For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11th hour on the 11th day of the 11th month.  Do you have a task you complete every day at the same time that helps with your chronic illness?  How long have you been doing this, how has it helped?

I cannot say that I complete a task every day, at the same time which helps with my chronic illness.  In my personal experience, no two days are exactly the same when living with a chronic illness.  In addition, life with a chronic illness can instantly change within a blink of an eye; one minute the symptoms are in the background, calm…and the next minute they are wreaking havoc amongst your body and impacting upon your life and your routines.  For example, very often the neurological condition that I live with causes such severe weakness in the legs and intense dizziness that I am unable to get out of bed, and even if I did have task that I complete every day at the same time, I could not very well leave my bed to complete the task.

 

Keeping to a routine can be very difficult when living with a chronic illness
Keeping to a routine can be very difficult when living with a chronic illness

 

Making plans, whilst living with a chronic illness can also prove be very difficult as because every day is so very different, we can never tell how we will feel on that particular day.  Do we dare to book tickets for a concert or play just in case we are unable to attend?  We are ruled by our bodies and as a result we are governed by our conditions and its symptoms; dizziness, pain, weakness or overwhelming fatigue may result in a person with a chronic illness to cancel plans, or cease our routines to rest and recuperate.

 

Cancelling plans can be as disappointing to us as it is for our friends and family...
Cancelling plans can be as disappointing to us as it is for our friends and family…

 

Recently, I have even been finding that the coping strategies that I do have in place regarding the dizziness, can work one day but as the intensity of the dizziness may be worse the next, these coping strategies are not proving to be effective.  So, to conclude, living with chronic illness can vary from day-to-day; and even from hour to hour or in certain cases from minute to minute, and although we all would like little tasks and routines to complete every day to make us feel better, our illnesses can prevent us from completing them, ruining all of our plans and routines.  Certainly, life with chronic illness is never the same from day-to-day….

 

At the end of this post, as it is Remembrance Day, I would like the opportunity to pay tribute to every member of the armed forces, past and present;  all of their hard work and sacrifices that they make in serving our country and allowing us the freedom that we are so fortunate to have today.  You are all heroes and we will remember all those from all the wars that were not so fortunate to return home to loved ones.  I certainly will be wearing my poppy with pride today…

 

Wearing my Poppy with pride today! #lestweforget
Wearing my Poppy with pride today! #lestweforget

 

As always would love to hear your thoughts and views!  Do you have any strict routines you adhere to when dealing with chronic illness?  Does it help?  Please leave comments below!

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Alternative Medicine

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Welcome to the tenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Alternative Medicine: Write about alternative treatments and regimens and tell us how you feel about them.  What do you support?  What is crazy? Have you used any? 

As my condition is neurological, and the dizziness is looking like it is being caused by a problem between the signals between my brain and eyes, then I am not so sure that alternative medicines would really work in my particular case.  I would not say that I think the idea of any alternative therapies however is ridiculous; if a person finds something that works for them and helps them to feel better in a world of chronic pain or illness, whether it be conventional medicine or alternative medicine than I think a person should be free to choose whatever works best for them.

Admittedly, when the anxiety and dizziness first started to become a major problem and an obstacle that impacted on my everyday life, I did try Chinese herbal medicine after someone recommended it to by Mum – sadly it didn’t work for me, but it wouldn’t stop me from trying it again for some other ailment or even recommending it to someone else for them to try – after all, our bodies are different from person to person and one treatment which works for person A, will not however work for person B.  I did however find that aromatherapy helped somewhat with the anxiety, and using lavender on a regular basis helped me feel calmer and less nauseous. I have just bought a little wheat bag and have hung it my bed to help send me to sleep, even when the dizziness and pain is stopping me from doing so, and has found that it has been doing the trick!

 

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My little lavender what bag – hung by my bed and complete with a little dachshund to remind me of Honey

 

Last week, I had a flare of my IBS symptoms, with bad cramping in my stomach, and a great friend suggested drinking peppermint tea.  I found that it instantly calmed my IBS symptoms, and the cramping instantly eased.  So although alternative therapies may not solve the entire set of symptoms caused by my neurological disorder, at least I have found something to help during flares of IBS.

 

Peppermint tea does wonders for my IBS symptoms
Peppermint tea does wonders for my IBS symptoms

 

As a lot of you may know that my symptoms such as the pain and trembling in my legs as well as the dizziness and vertigo has started becoming worse of late, and a few people have suggested alternative treatments such as seeing a Chiropractor or perhaps even attempting acupuncture.  Although I am not closed off from trying alternative forms of treatment, I think one of the worries of such treatments is the cost.  In Wales, receiving prescriptions is free, however alternative treatments are not offered on the NHS, and can be very costly.  For example, a friend of mine was spending approximately £90 a week on sessions with a Chiropractor, and perhaps one of the worries is the financial implications on using such treatments especially if they fail to work.

Next year, I am going on a cruise with my parents and am aware that they offer treatments such as acupuncture on board the ship that we are going on; perhaps I will give it a try – after all, isn’t one of the benefits of going on holiday is to try new experiences?

But for now, perhaps I shall stick to my own personal alternative regimens that for most part ease my symptoms, such as wearing a hat when out in my wheelchair.  I have found doing this ease the dizziness somewhat; blocking the visual stimuli that can make the dizziness worse, or even trigger an episode of vertigo.

One thing that living with chronic illness has taught me is that whatever helps us live with such debilitating symptoms or even eases them, then we should take full advantage of, however crazy they may appear or even what other people think…

Would love to hear your thoughts on this subject!  Have you tried any unconventional or alternative treatments in your quest to feel normal in the chronically ill world?  Feel free to post your stories and comments below…

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