Category

Chronic Illness

Category
In Chronic Illness

Chronic Illness and its awkward situations can be embarrassing but they can also make us grow…

No Comments

nhbpm_daycount-16

Welcome to the sixteenth 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:

Well, that was embarrassing…  What’s the most awkward situation your health condition ever put you in?  (Don’t be bashful, we’re all friends here).  Maybe you can look back on it now and laugh, but it wasn’t so funny then

I suppose, one of the benefits of living with an invisible health condition is that when you are out of the home and walking amongst the healthy, others are not aware that you have a chronic illness and you are able to bask in the pretence that you are just like everyone else.  I used to be able to do just that; walk around as if I was perfectly healthy, ignoring the dizziness, pain and weakness that was reminding me that I wasn’t like everyone else.

However, after the condition started to worsen, the awkward phase of my neurological condition began to present itself – frequent fall in public.  Yes, it happened in shops, at home, at houses of friends and family as well as the centre where I used to volunteer – my legs would suddenly give way which resulted in my entire body collapsing to the floor.  I found this extremely embarrassing , especially at the times when I was unable to get up straight after the fall because of the weakness in the legs.  Looking back I do not think it was just the situation that I found awkward and embarrassing, which I did especially given my age and partly because at that time I didn’t know what was wrong with my body.  No, it was also the attention that it caused from others who were around, the stares and the fuss that these falls caused; it was especially embarrassing when it happened in shops and being helped by elderly people who were much older and obviously fitter than myself!

Of course, this happened, not just the one time but happened extremely frequently for several years.  Then, once it happened right in the middle of a popular clothes store in town when I was out with my carer, and because of the weakness in not just my legs but throughout my entire body, I was unable to get back up for approximately ten minutes and so had to be helped by several members of staff and my carer to a stool that they had lent me.  The shop at the time was quite busy and there were several members of staff, so as it happened in front of so many people was very embarrassing especially given the stares and people asking me if I was alright and if there was anything they could do (don’t get me wrong I find that to be very kind and thoughtful but still it doesn’t make any less embarrassing!).

imgres-1

Looking back at this particular incident however, I now realise that it was an important part in accepting the deterioration in my mobility and overall condition and finally accepted the need for the wheelchair.  Perhaps, it is an incident that was awkward but one which was enlightening and shone the light on an aspect of my life that was changing but could do something to help me adapt to the new situation.  It also shows that awkward and embarrassing situations, although can be upsetting and distressing, they can prove to be situations that cause us to learn and grow…

Has your health condition caused you to have an embarrassing incident?  Would love to hear your comments and thoughts as ever!  Please leave any comments below!…

by
Keep Reading
In Chronic Illness

The People I Love to Follow…

No Comments

nhbpm_daycount-15

Welcome to the fifteenth 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:

Favourite Fridays: Who are your favourite people to follow on social media?  (Twitter, Facebook, Instagram, etc.)

 

 

imgres-1

 

The first person that I love to follow on Twitter is of course my best friend and surrogate sister @AishaJemima.  Aisha is a truly inspirational woman; who is determined to fight for all those suffering with chronic illness through her work establishing ‘Unseen Magazine’; a magazine coming soon for everyone living with or caring for someone with a chronic illness.  Although, fighting with a chronic illness herself, Aisha works very hard behind the scenes on the magazine, but more than that despite everything she has to contend with her tweets are always extremely positive and uplifting and as well as this she is always sends a lot of support to a great many number of fellow ‘spoonies’.

An example of the positive and uplifting tweets I have received from Aisha:

 

Another person on Twitter who I love to follow is another ‘spoonie’ friend of mine @anyadei.  Anya is a very compassionate and intelligent young woman who is extremely passionate about patient advocacy and self-management of long-term health conditions.  On social media such as Twitter Anya, always raises great and though-provoking questions regarding  topics relating to healthcare, self-management of long-term health conditions and patient issues; as well as tweeting links to a variety of different articles relating to issues she is clearly so passionate about.  And as well as all this and working in this particular field and battling several long-term health conditions herself, she still remains extremely supportive of myself and other spoonies on social media; with supportive tweets sent on days which are proving to be very bad.  It is tweets such as these which really make these bad days bearable.  Thank you xx

And finally…

An organisation that I am involved with and following on various forms of social media is @NeuroNula.  As someone who is living with a long-term neurological condition myself, I know how little support there is out there for neurological conditions.  And not just support but also information regarding other services and organisations that can provide services for patients with neurological conditions.  Therefore, that is why I love following Neuro Nula on social media as well as sharing or retweeting messages that they have posted – if it can help one person to feel like they are not alone in this journey of living with a neurological condition as I have done for so long then it is a job well done.  I really look forward to seeing the final website and meeting other people with neurological conditions and gaining new friends along the way!

by
Keep Reading
In Chronic Illness

Chronic Illness and Working

No Comments

 

nhbpm_daycount-14

 

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.

by
Keep Reading
In Chronic Illness

The Evolution of a Patient

No Comments

nhbpm_daycount-13

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.

by
Keep Reading
In Chronic Illness

Top 3 Tuesdays: Music to lift the spirits

No Comments

 

nhbpm_daycount-12

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….

by
Keep Reading
Pin It