Category

Chronic Illness

Category
In Chronic Illness

Where there’s a will; there’s a way….

No Comments

BCCY6Z7CcAA0Q7e

In my last post, I wrote about my disappointment at not being able to stay at the local multiplex cinema to see Les Misèrables – a film that has been on my ‘must-see’ list since I heard about the film.

However, I have now actually seen it!!  Although it meant that my Personal Assistant and I had to travel further afield to a cinema that is not as big and imposing as the cinema that is nearby.

imgres

 

And it has made me realise that although our lives is plagued with problems as a result with chronic illness – and often we feel that it leaves us unable to do things that we once enjoyed.  However, maybe the last statement is not true – maybe the way we used to do something is something we are unable to do; but there may be another way that we can still participate in the particular activity.  We just need to find a different path to be able to enjoy our chosen activity.

Not that the cinema was without problems for me – all of the stimuli from objects flying towards the screen, the loud audio and high ceilings left me feeling very dizzy, and often had experiences of vertigo and vision lost throughout the film; but even so I thoroughly enjoyed the film and found a real sense of accomplishment that I managed to overcome all the unpleasant symptoms and stay to watch the entire film.  I could not recommend the film enough – the beautiful songs and the incredible performances of all the cast (and in my opinion, even include Russell Crowe in this) carries the audience through a number of emotions throughout the film – and yes, I cried several times through the film.

That old adage is indeed correct – “where there’s a will; there’s a way!”

by
Keep Reading
In Chronic Illness

Learning to Live with Disappointment with Chronic Illness

No Comments

disappointment-300x199

Disappointment is often something that you live with when living with any chronic illness – due to fluctuating symptoms and flare ups we often have to miss special occasions or cancel plans with friends or family.  And followed by cancelling of plans, comes the inevitable pangs of disappointment of missing out on such occasions.  This disappointment is even more amplified when friends talk about how wonderful the night was; making you feel even more miserable that you missed out (again!).

I felt this pang of disappointment recently – one of my goals for the beginning of the year was to visit the cinema as I really want to see the film version of Les Misèrables.  However, when I attempted the trip to our local multiplex cinema, I was so overcome with the dizziness and vertigo that I was just unable to stay in the building.  Of course, I felt extremely disappointed – in myself and my broken brain; stopping me from enjoying something as ‘normal’ as visiting the cinema.  I all honestly, the experience made me feel like a failure – failure as I failed to achieve a goal that I so desperately wanted to accomplish.  Hopefully, this is a setback and one day I will be able to go into that cinema, and even be able to stay long enough to watch the film.

So how should we ‘spoonies’ cope with these inevitable disappointments when we are unable to attend events or accomplish goals we wanted to achieve?

Well,we fist need to acknowledge the disappointment and anger that we may feel towards the illness that often feels as having robbed our lives. Then after acknowledging the anger we then have to deal with it.  This could be going to counselling or attending a support group associated with your particular condition.

Educate yourself, of your condition – there is no such thing as an overeducated patient.  Read as much literature as you can; and learn how the disease or illness can affect the body.  This can make it easier to perhaps plan for such times when we are invited out somewhere or planning trips somewhere, and perhaps being able to come up with a ‘plan of attack’ – a plan for dealing with such problems that can arise as a result of the particular health condition.

Perhaps, the biggest lesson that I have learnt is that we are all more than our condition.  We, of course, need to acknowledge the existence of said disease or illness, however it does not need to be self-defining.  Although there may be certain activities or have certain limitations, there are still however, plenty of things that we ARE still able to do.

It is often important when dealing with disappointment after not achieving goals, it still to keep a positive attitude as research has shown that being positive despite illness makes it much more easier to cope with.  Be grateful for everything that you do have rather than focusing on everything we haven’t or focusing on pain or our negative situations.  Perhaps keep a gratitude journal and list all the things that we have been grateful for on that day.

2010-05-19-gratitudepic

 

How do you deal with disappointment?  And more importantly how do you cope with the disappointment?

by
Keep Reading
In Chronic Illness

Winter and Ice has arrived!…My Nemesis…

No Comments

Ice crystals Hey Everyone I hope that everyone is well and so far is experiencing a great 2013!  For those living in the UK, as I am you may be aware that the country has been affected by snow and icy conditions; schools have closed here in Wales because of widespread icy conditions therefore making driving hazardous. I know for many, snow brings joy and happiness – the picturesque scenes that it creates as well enjoying snowball fights and so on.  However, for many people; those in similar circumstances such as myself, it can create anxiety, even leaving some housebound during these weather conditions.  For example, this morning I had an appointment at the dentist; however, I was unable to attend because where I live was extremely icy because of the ice that developed overnight.  Myself, as well as my parents were concerned due to my impaired mobility and balance problems that I was at a high risk of a fall…I am very fortunate that despite the numerous and often severe falls that I have experienced, I have not broken any bones, so we did not want to risk anything that may potentially break this record!! The Winter can be a difficult time for anyone with a neurological condition like mine; especially as the very cold weather can make the spasticity in my legs worse than usual.  As well, as heightening the nerve pain. So, what are some of the ways in which those like me with neurological conditions can cope with the icy and winter conditions?  Here are some tips that I have found from magazines and the internet:

  • Keep warm!  Extra layers such as thermal underwear can keep the heat in, and stop symptoms such as nerve pain from getting worse because of the very cold weather.  And don’t forget to keep hands and feet warm with thick socks and gloves as well as a warm winter coat, hat and a scarf when out and about. 
  • If the nerve pain is confined to a particular region in your body, then make sure that region is well protected from the cold as the cold can heighten the amount of pain experienced
  • Hot water bottles and heat pads can be extremely useful for extra warmth – or perhaps, use an extra thick blanket, or invest in a ‘slanket’ which is a blanket with sleeves and even some has a pocket for your feet!  Great for keeping warm when watching TV on those very cold nights!
  • Keep your home warm – the ideal temperature for your home during the winter month is between 18ºC and 21ºC.  And the bedroom at night should be kept above 18ºC
  • Stay active as it increases the circulation and generate heat
  • If nerve pain is much worse during the winter months than perhaps it would be a good idea to speak to your doctor for extra medication to help during these months
  • If it isn’t necessary than it may be an idea to stay indoors especially if you experience problems with balance in order to prevent falls
  • If you do have to go out for any reason than make sure you wear appropriate footwear; for example flat footwear with rubber soles provides better traction on the snow and ice than leather soled footwear or high-heeled shoes
  • Where possible make sure that you use handrails
  • Take small steps in order to keep your centre of balance and walk slowly
  • Avoid carrying heavy shopping bags, especially on steps

For more information:

How do you cope during the Winter months; and particularly when there is snow and icy conditions?  Are there any other advice you can give to cope during these hazardous weather conditions?

by
Keep Reading
In Chronic Illness

“How are you?” A Spoonie’s most dreaded question!….

No Comments

Facebook

The above appeared on my Facebook timeline the other day, which in turn got me thinking about when I am asked how I am feeling by others during my everyday life.

The question “How are you?”, is one in which is particularly hard for us who are chronically unwell.  How on earth do we answer in a few short words?  How can we answer, when we ourselves are often confused over our own feelings.

And then there’s the whole range of symptoms that we have to live with on a daily basis – tiredness, aches and pains, headaches, nausea, dizziness and the list goes on and on….

Plus, many of the symptoms, that I and other spoonies out there, the severity of the symptoms often varies from day-to-day; often changing moment to moment, and so describing exactly how we are feeling may take  some explaining!  And many people, are then afraid of the awkward silences that may follow the answer, when we decide to divulge the truth of how we are; friends not knowing what to say or how to respond to the realities of being chronically unwell.  Then there are other people, who like to offer their advice; often advice which is well-meaning and is offered with the best intentions, but only come off as being condescending and patronising, such as “You need to get out more, it’s probably just stress, and staying in, probably isn’t helping your condition”, there are many more examples – too many to mention here!

Perhaps we should come up with a new greeting for those living with a chronic illness, perhaps something like “You look well, I hope you are as well as to be expected…”

Any thoughts….

 

by
Keep Reading
Pin It