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Chronic Illness

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Welcome to the twenty-sixth 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 3 Tuesdays: List three questions you have for other patients.

As I have yet to meet another patient with the same condition as myself, I have decided to ask questions that could be answered by any patient with any chronic illness.  This prompt could provide excellent dialogue between myself and readers of the blog, so please comment if you have any answers to the questions that I will ask during the course of this blog post.

How do you make being bed-ridden more fun?
How do you make being bed-ridden more fun?

How do you make spending time in bed fun?

As I am writing this post; I am doing it from my bed.  Today, my legs have decided not to work and so I am forced to being stuck in bed; unable to walk or even stand.   I hate being stuck in bed; I find it dull and tiresome as there is only so much one can do from bed.  I am fortunate to have my own television set in my bedroom, which thanks to my parents has access to satellite television, as well as my iPad in which I can watch films from my own collection or through those shown on Sky or through Netflix.  However there is only so much reading and watching television a girl can do before becoming bored.  Therefore, one question that I wish to ask other patients is: How do you make spending time in your sick-bed fun and tolerable?

How you stay calm before attending hospital appointments?
How you stay calm before attending hospital appointments?

How do you cope with hospital appointments and make attending more bearable?

I know that no patient likes attending hospital appointments, but no matter how much I try, I am always so nervous before leaving the house to travel to the hospital.  When that letter first lands on my doorstop; the nerves begin it kick in, and the appointment is the only thing that is on my mind until the appointment day arrives.  The night before, I feel sick and anxious, with thoughts running through my mind about what will happen at the appointment; what the doctor might say and generally imaging all the worst case scenarios.  As a result my next question for other patients would be: How do you cope with endless hospital appointments? How do you relax before an appointment?  Are there any routines you have to make the day fun and tolerable?

How to keep calm and carry on with chronic illness...
How to keep calm and carry on with chronic illness…

How do you cope with living with a long-term health condition?

My my final question for patients with chronic illness, like myself would be related to how the cope when the illness becomes too much to handle.  Lately, the dizziness that I constantly live with anyway, has become even more severe.  In addition the pain, fatigue and weakness in my legs has also worsened.  As a result of struggling with this, the depression that often accompanies chronic illness has reappeared and I have been struggling to cope in dealing with everything.  So, my final question, would be: How do you continue to cope when your illness becomes too much to handle? How do you distract yourself from the pain, depression and other symptoms you experience?

There are my three questions for other chronically ill patients.  Do you have any other examples of questions to ask to other patients?  As ever would love to hear your thoughts, comments and suggestions! And don’t forget to comment below if you have any answers to the above questions.  Thank you xxx

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Welcome to 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:

It’s the Holiday Season! Give us some tips you use to balance the holidays and your health.  How do you stay within your own boundaries and make sure you follow your health regime/plan?

Lets's start preparing for the holidays...
Lets’s start preparing for the holidays…

Christmas is perhaps my favourite time of year.  Although it’s extremely cold and miserable weather outside, in my opinion the season still provides a lot of joy and fun for everyone.  However, although it’s an extremely wonderful time of year, it does provide a number of challenges for anyone living with a chronic illness or disability.  So, the question stands: how can we deal with the upcoming holidays and still have fun and merriment and still look after our health and well-being?

The first must-do, especially at Christmas is to pace ourselves.   Although, the Christmas season is a very hectic time of year, and there is plenty to do, it is important for anyone living with a long-term health condition to be realistic about how much you are able to do and cope with.  Perhaps, use a diary and pre-plan your days of what you can do to plan for the holidays and mark down when you plan to carry out specific tasks relating to the holiday season such as when to do the Christmas shopping, going to visit family and friends to drop in presents and cards, as well as finding time to put the decorations up, and so on.  By planning and making time each day to prepare for the holiday season, we can ensure that we can also make time to rest and recover any energy that has been depleted whilst planning for Christmas.  This is especially important, as if we do too much and take on more responsibility than our bodies can handle , then we run the risk of becoming ill and suffering a relapse in our condition, and will therefore have an impact on our enjoyment of the holidays.

Planning is key for an organised and stress-free Christmas...
Planning is key for an organised and stress-free Christmas…

Planning is also key in having a fun and carefree Christmas and New Year.  Make lists of everything that you need or plan to buy for everyone you are buying a present for.  This will certainly help alleviate any extra stress that Christmas can place upon a person.  This is especially important for anyone with a chronic illness as stress can exacerbate illness, which can then lead to a relapse.  Also, it is important not be afraid to ask for help when needed, or when everything is becoming too much as it inevitable can during this time of year.  Again, doing too much can be dangerous for anyone living with a long-term health condition as we then run the risk of becoming ill during the Christmas season, and as a result it would not be an enjoyable time for you, as it should be.

Of course, as a result of the Christmas celebrations it means that we often deviate from our usual routines – we stay up later, get up later, and we may eat, drink and do a lot of different things that we are not used to.  However, it is therefore imperative that although our routines may be disjointed from usual, we still must remember to take our usual medications.  If memory is an issue for you, then remind yourself by setting an alarm on your watch or mobile phone to prompt you to take them.  Also, the Christmas seasons may mean invites to a lot of parties and other social gatherings, so think about perhaps either arriving later or leave early to avoid tiring yourself out, or alternatively ask the host if there is anywhere that you can sit or lie down to rest and recover during the party.

Also, although it may be tempting to join in with everyone else, in enjoying a lot of alcohol, it may be that you need to watch your intake of alcohol, especially if on several medications as it could have an adverse reaction with them.  Check with a pharmacist if it is safe to drink alcohol.  In addition, as I always do before the holidays, make sure that you have enough of your medication to last throughout the holiday seasons,  and ensure that any prescriptions will be processed in time, allow plenty of time as there may be a rush on Christmas Eve; also stock-up on over the counter medications as they may too be needed over the holiday season.

There are my top tips for surviving the Christmas holidays with a chronic illness!  Do you have any other tips for the readers?  How do you live with a chronic illness but also ensuring you enjoy the Christmas festivities?  As ever would love to hear your thoughts, suggestions and other comments you may have!  Comment below…

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Welcome to 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:

Taking the High Road: Write about a time you had to be the bigger person and take the high road.

A while ago, I was having a conversation with somebody online, and they enquired about my life with my health condition.  As I explained the symptoms that I experience, the person responded “Surely, dizziness isn’t that bad to live with.  I’ve experienced it a few times, and it wasn’t that bad…”  At first, I was astounded, and really wasn’t sure how to respond.  Then, I got really angry, and wanted to shout (or in this case type!) “It’s not that bad!  You try living with this constantly and then try telling me it isn’t that bad!”

As much as I wanted to, however, I didn’t and took the high road, and instead responded “Well, I am glad your experience with dizziness wasn’t bad”.  That was the end of the conversation, and instead opted for safer conversations such as books that we both like, and films and so on.  Looking back on the conversation, and after having conversations with other people suffering with chronic illnesses, I realised, that although the person’s comments were not said to be malicious or hurtful, although I found them to be just that; it is very difficult however extremely difficult to imagine  the severity of any symptom that a person suffers with, unless you have experienced it yourself.

Never a judge a person or indeed their illness if you haven't experienced it yourself...
Never a judge a person or indeed their illness if you haven’t experienced it yourself…

Perhaps, when people, whose words we perceive to be hurtful, in relation to our illness, we need to take a step back and instead of shouting and hitting back at their words, we can take instead it take as an opportunity for educating others’ about our particular health conditions, and becoming an advocate for everyone who lives with the condition.  It provides an excellent opportunity to really discuss with others’ what it is like to live with the illness, and to dispel popular myths that exist in the media and wider community.

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Welcome to the third 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:

Teaching the Teacher: What’s something you taught your doctor related to your health?

In my experience, this is typically a very hard question to answer, especially in the UK  National Health System.  In the GP Surgery, I attend and the difficulty in getting appointments, it is very challenging therefore to get an appointment with the same doctor.  As a result, you often see a different doctor at each appointment, and therefore it is difficult in this scenario to be able to teach your doctor anything regarding my health.

In addition, even attending hospital appointments with consultants; I have often seen different doctors at each appointment I have attended; especially given that I often been  discharged from specialities, and then had to be referred back to the same specialty when the symptoms have worsened, or new symptoms have been occurring.  Given, that I have been dealing with this revolving door of dealing with different doctors, I feel that in this  situation, I am not abled to teach the doctor’s anything.

Patients are an important aspect of a doctor's education...
Patients are an important aspect of a doctor’s education…

However, really thinking about the above question, aren’t we actually teaching a lot to the doctor’s regarding our health, no matter which doctor we are seeing?   After all, during every appointment, we are teaching the doctor a lot about our health by discussing our symptoms, triggers that may precipitate the symptoms, and so on.  The doctor needs to be taught all of this information to adequately give we the patients a diagnosis, and subsequent treatment plan.   Every piece of information we divulge to doctors, is a small piece of a very large jigsaw, that is our health.  And with each new piece of the jigsaw, the doctor is able to take these pieces and determine where these particular parts fit in the overall picture of the patient’s health, and then as more and more pieces are revealed and pieced together the doctor can provide a diagnosis.

What’s more, everyday patients are educating doctors – think about, every time a doctor sees a patient with a specific health condition, for example, lupus or multiple sclerosis, they learn about the symptoms that can present.  As a result, when doctors see patients that are presenting with a set of symptoms that they have seen previously, then they may have immediate suspicions of what is wrong with the patient, which then could lead to an early diagnosis and treatment.  This may be especially important when dealing with rare conditions, such as mine.

So, even when we think we are not teaching our doctors anything, we are wrong, because we are in fact teaching them a lot – we are not only teaching them about our health, but also giving them information that they can use again when seeing other patients exhibiting similar symptoms to ourselves.  We as patients, it could be said are an important aspect of a doctor’s continuing education!

What are your thoughts?  Have you taught a doctor anything?  As ever would love your comments and thoughts so feel free to press that comment button…

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Welcome to the twenty-second 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 post reads:

Favourite Fridays: What are your favourite blogs to read and why?

The Patient Patient  Transforming patient experience  WITH patients

The first blog that is definitely on my to-read list, is written by a good friend of mine, Anya.   The blog is entitled ‘The Patient Patient‘ and is a thought-provoking read, as it not only documents Anya life living with several long-term conditions, but also informs the reader on issues relating to the NH, medicine and the self-management of chronic illness.  Anya writes eloquently, and her posts reflect that she is writing about is a topic that she is passionate about.  In addition, Anya is hugely involved with organisations that promotes the empowerment and engagement of patients in their own care, and with this work, is able to attend conferences, both as a guest and speaker, and what is great that when writing about these conferences, Anya makes the reader feel a part of the experience.  Another aspect of the blog is how many of the posts, are relatable to every person living with a chronic health condition, such as the frustration of waiting for appointments, and recently regarding the search of a wheelchair, which as someone who also now needs to use a wheelchair, is one post I really related to.  For anyone who wants to read a blog which is thoughtful, informative and relatable, the surely ‘The Patient Patient’ is for them.

 

Chronically Creative   About Miss Chronically Creative

Another favourite blog is mine is ‘Chronically Creative‘, a blog created by a young woman named Emily who battles a number of chronic illnesses, including fibromyalgia, rheumatoid arthritis and chronic fatigue syndrome.   What I love about this blog, is that it is not only just about the journey of living with chronic illnesses, which from personal experience I know is incredibly difficult, but is one which offers joy and hope despite illness.  And what is more, as someone who has recently engaged with creating a variety of different crafts, the blog also encompasses this with a variety of different posts regarding creativity such as nail art, scrapbooking, card making, baking, and so much more.  It is a fantastic blog to read when wanting new inspiration for a new craft project, or wanting to bake something different and so on.

 

Stumbling in Flats » . . . a funny old life with multiple sclerosis Stumbling in Flats

 

The last blog that is on my to-read list and which is among my favourites is ‘Stumbling in Flats‘.  Although I do not suffer from MS, as my condition is neurological and is caused by a brain stem lesion, a lot of the symptoms that I experience is very similar to MS.  So, when I read this blog, a lot of the scenarios and experiences that is written, I find that I completely relate to.  Also, this blog although about life with multiple sclerosis, which can be difficult, it is however very light-hearted and funny, and can even make you look back at scenarios in your own life, and laugh despite it being embarrassing at the time of the incident!  It provides hope beyond the diagnosis of such a long-term health condition, and shows that even with an illness like MS, life can go on just as before, and can live a normal and fun-filled life.

 

So, those are 3 of my favourite blogs!  Do you have any favourite blogs?  Any recommended reading?  As ever would love to hear your thoughts and suggestions!  Comment below…

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