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Don’t be SAD…Banish those Winter Blues…

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Winter is a miserable season for everybody.  It’s cold, wet and the mornings are dark and depressing, and the dark descends upon us far too easily in the evenings.  For those battling with chronic illness, it can be even more miserable; with the cold affecting pain and fatigue levels.  And of course, Winter, and the darkness that comes with it, can cause Seasonal Affective Disorder; a type of depression that occurs during the Winter months and is thought to be linked to reduced exposure to sunlight.

For me, the Winter months, and particularly living here in the UK, affects the amount of pain I experience.  I find that the very cold weather, which unfortunately we are prone to here.  This year has been particularly bad, with a lot of rain and the bitter cold, which has resulted in me being in a lot of pain whilst out with my carer, especially when needing the wheelchair.  In order to help with this I really believe in layers, and especially thermal trousers and a top to protect your body from the cold.  As I experience bad pain due to my neurological condition, particularly in my legs, I therefore never leave the house without a pair of thermal trousers on to protect them from the cold, and to lessen the likelihood of experiencing severe pain.  Also, as many people have told me throughout my life, it is much better to stay warm and remove layers than it is to have one very thick layer on.  This is particularly helpful also, when shopping, as most stores become very warm, so is very helpful to be able to remove layers.  This year, as the pain has been worse, I have also tried to spend time out of the wheelchair when out shopping; as moving about is important to keeping warm, and so thought perhaps using the wheelchair was exacerbating the level of pain and fatigue that I have been experiencing.

Also, another necessity for going out and about during the winter months is to keep your hands and feet warm, with thick socks, gloves, as well as ensuring to wear an appropriate winter coat, hat and scarf.  Especially important when living with chronic illness

Of course, when suffering a chronic illness and living with it everyday, with symptoms constantly making themselves known, a lot of time is spent indoors.  During the winter months, it can be a good thing when the weather outside is awful!  I like nothing better when it is very cold than to wrap myself in a lovely thick blanket and curl up with a lovely hot mug of hot chocolate with a good book or even watch a film on Netflix or from my vast DVD collection.  I think this can also be a good tactic when dealing with the winter blues – think of all the things that you are able to enjoy whilst inside the house, whilst protecting yourself from the cold and rain (and perhaps even snow!) and bask in the enjoyment of being able to appreciate the little things that you can enjoy, such as watching favourite films or TV programmes, or even get around to reading that book you have wanted to read for ages.

 

Staying indoors because of the weather doesn't have to be SAD - it can provide opportunities to enjoy a good book or film whilst wrapping up with a warm blanket!
Staying indoors because of the weather doesn’t have to be SAD – it can provide opportunities to enjoy a good book or film whilst wrapping up with a warm blanket!

In order to alleviate the amount of pain and fatigue that I have been experiencing, I have decided to start moving more and start a new exercise regime!  Exercise releases endorphins which helps to release those feel-good chemicals in the brain and so thought that it would help to alleviate the winter blues that can occur during this time of year.  However, exercise for me is difficult due to my mobility problems, and which regular gyms are not suitable.  Instead, I have found a gym that is perfect for those with chronic conditions such as mine as the machines are power assisted and so moves your body for you.  It is even perfect for those without health problems as he machines can be used actively, whereby you can resist against the movements, giving an increased workout.  Once a week, I am also taking part in some Pilates, and although I have yet to see any benefits regarding the pain or strength in my legs, I am feeling more positive and seen an increase in my energy levels!  The Feel Good Factory certainly lives up to its name!

 

Exercise can really help alleviate those winter blues
Exercise can really help alleviate those winter blues

To find out more about the Feel Good Factory and the ShapeMaster equipment visit the website here

 

This post is for the February edition of the Patients for a Moment (PFAM) Blog Carnival which this month is being curated by Leslie of Getting Closer to Myself 

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The ‘Spoonie’ Spirit of Christmas…

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Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on.  Add living with a chronic illness to the mix and the stress is exponentially increased.  The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.

Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life.  Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.

Give back to those who help us throughout the year...
Give back to those who help us throughout the year…

This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy.  It was then that I remembered the old adage ‘it is better to give than receive.’  And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year.  The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.

Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so.  However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.

Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.

After all, isn’t giving to others encompasses the spirit of Christmas?

 

This post is for the December edition of the Patients for a Moment Blog Carnival which this month is being curated by Abigail from Hidden Courage.

 

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A life changed through illness…

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According to the Oxford English Dictionary; the definition of change as a verb is “make or become different.”   As a noun, change is defined as “an act or process through which something become different.”  In other words it is a transformation from one state to another.

Being diagnosed and living with chronic illness can be perfectly described by the word ‘change’ as our whole world is transformed from one of normality to one which includes numerous doctors and hospital visits as well as daily treatments.  But transforming from being healthy to one with a long-term chronic illness is not the only change that occurs when illness takes ahold of the patient.  Relationships, hobbies, like and dislikes as well as daily routines are all impacted by chronic illness and can change as a result.  Personalities can change also, from someone who was outgoing, bubbly and happy can change to someone who is quiet, reserved, and has a low mood as a result of being diagnosed with a long-term health condition.  Once, a person loves nothing but a night out with friends, but often when a chronic illness sets in then a night-in wearing comfortable pyjamas and watching TV seems like the idyll.   Illness changes every part of a patient’s life.

But how has it changed my life?  This is a great question, especially the long-term condition which I live with started during infancy.  In this instance the changes have been more subtle; slowly progressing but changes nonetheless.  Before my condition started progressing and becoming worse, I had no problems with walking, sure, my legs started feeling stiff and uncomfortable but other than that I could walk fine.  Then, the condition progressed, making my balance worse as well as worsening pain and weakness in my legs.  And as a result mobility accessories was another change that presented itself in my life – first was my cane, then the crutch and now I rely on a wheelchair when I go out.

Relationships in my life has also changed, once I was a dutiful daughter, happy to complete chores to help out around the house, now however, I am increasingly reliant on my parents for help  – help cleaning around the house as well as my bedroom, help making meals and sometimes even simpler tasks such as making a sandwich, as well as helping me get to the bathroom when my legs are really bad.  Often it feels as if our relationship has changed from that of parent and daughter to that of carer and patient.  Friendship has been a constant change too in my life; often than not, friends don’t seem to stay very long in my life, whether or not they get bored with me saying no to day or nights out because of illness.  Or perhaps they feel resentment for the need to pick me whenever we make plans because of my inability to drive due to my condition.

A lot of the friends I have met through the blog and Twitter who are also battling chronic illness has also talked about the change in their lives but I like to think that although there are a lot of negative changes that illness inflicts upon our lives it also has many positives, such finding each other through illness and finding connections between our lives because of it.  Through illness it has helped us make very real, supportive and life-long friendships that will long remain.  But also, living with a life-long chronic condition can also make us more understanding,  and emphatic towards others.  Illness does not mean the end but can change us into more beautiful and understanding human beings.  Perhaps this can best be summed up by the proverb:

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This post is for the October edition of the Patients for a Moment Blog Carnival which is being curated by Life with RA is a Pain.

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How to get the best out of medical appointments…

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I am participating in this month’s Patients for a Moment blog carnival!  This month’s carnival is being hosted by Abigail at Hidden Courage.

The Patients for a Moment blog carnival is held every month and solicits submissions from bloggers regarding a topic related to illness, whether it be from the perspective of a patient, carer or a professional – the carnival is open to everyone.

This month’s theme is: getting the attention you need.  Specifically, getting the attention you need as patients within the healthcare system.   I am sure every patient, has been casually dismissed by a busy, overworked doctor, with a glance at their watch, counting down the time when we should be out, and time to see the next patient.

It seems as if doctors are constantly watching the time
It seems as if doctors are constantly watching the time

However, what is it like to be a patient with a long-term chronic illness, where it seems that we are constantly being dismissed by the healthcare system.  And what can we do to get the attention that those with chronic illnesses need and deserve despite often having difficult and challenging conditions which are not always easy to diagnose nonetheless treat.

As a patient with a long-term chronic illness; an illness which went undiagnosed for years, and one which was misdiagnosed as an anxiety disorder, I have at times felt ignored or dismissed by the healthcare system on countless occasions.  When I tried to challenge the doctors that the dizziness started before the anxiety, however, I was dismissed yet again, probably deemed to be a hypochondriac  and again sent on my way.

Being ignored and dismissed by doctors, and being constantly told that the symptoms you are experiencing are just ‘all in your head’ can be demoralising; especially when the symptoms that are supposedly in your head are for you, very very real.  A problem that I often experience is the lack of consistently in my care from the medical profession.  The surgery that I am registered with has several different doctors, and you are never guaranteed to an appointment with the same doctor.  This is a real disadvantage for patients with an unusual chronic illnesses as it means that you have to reiterate your medical history, diagnosis and so on at every appointment.   Also different doctors have different methods of working and ideas, therefore patients with chronic illness often prefer to see the same doctor for consistency in their care and to see a doctor that know their full medical history and familiar with their diagnoses.

So, whenever I make an appointment with my local GP Surgery, I makes sure that I ask to see my regular doctor – doing this also saves me and the doctor time as I don’t have to waste several minutes of the appointment explaining my medical history.

In the end I had to fight very hard to even get a referral to see a neurologist.  I was lucky that I had a strong support system in the form of my parents, and found it incredibly useful to have an advocate present during the appointment to stand up for me when I didn’t have the confidence to stand up for myself.

Another barrier that I have found is the routine questions that doctors often ask, such as asking to describe what the dizziness is like; however how am I expected to describe an experience that is so difficult to explain in words – especially when put on the spot.  Often I have found that there are so many ways to describe certain symptoms, and I cannot always find the right word to describe the experience of the dizziness, or trembling in my legs.  If patients are inconsistent in their account, doctors are then more likely to dismiss them and not take them seriously.

In order to avoid this barrier, and to ensure that I adequately describe the symptoms accurately and consistently I write my experiences with my illness (both physical and psychological symptoms), in a journal and then take it with me to appointments.  A second notebook is also very handy to take along to appointments in order to write down notes regarding the information and advice that the doctor passes along to you, especially helpful if you are likely to forget after the appointment has ended.  Not only is it helpful to make notes it also shows the doctor that you are a patient whom is pro-active in their approach to their own health, and also are a cooperative one.

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Keep track of your illness by journaling! And takes notes during appointments to get the most out of it…

So to reiterate; in order to be taken seriously by the medical community and not to be dismissed by doctors here are my tips on how to get the best out of appointments:

  • Do not be afraid to advocate for yourself to get what you need in terms of referral, treatment and so on.  If you are unable to do so for whatever reason then perhaps take someone along to appointments so they can advocate on your behalf
  • Try and get appointments with the same doctor to get consistency of care and prevents you from having to divulge your entire medical history at every appointment
  • If you can, try keeping a journal or even a small notebook where you can keep account of your medical condition, such as symptoms – the frequency, severity and whether certain treatment or approaches seem to have any impact on them
  • To show that you are a cooperative and pro-active patient, take notes and ask open-ended questions at appointments which will less likely result in you being dismissed by doctors and other medical professionals
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