Tag

treatment?

Browsing

My condition has not improved; at times it feels as if it is steadily getting worse and so as my condition has been significantly bad recently, it has meant that I have spent a lot of time in bed and watching television.  I have particularly been enjoying spending time watching medical dramas – Saving Hope, Grey’s Anatomy, Emily Owens and M.D and notably Monday Mornings.

Although, I love these types of show, as a spoonie however, I do find them to be quite unrealistic.  In one episode of ‘Saving Hope’ for example, one doctor immediately diagnosed a brain tumour  (even before ordering an MRI!) in her patient after observing a symptom, although most common in this particular type of brain tumour but can also be indicative of other neurological conditions.  Although many spoonies, go through endless hospital appointments and tests before receiving a definitive diagnosis, patients depicted on such medical dramas such as Grey’s Anatomy are quickly diagnosed and  treated – if only the reality was that simple!!

 

 

 

 

But what if the condition is untreatable?  My condition is one such illness that is sadly untreatable.  Sure, I am prescribed several medications designed to control the symptoms that I experience; such as Gabapentin for the pain in my legs.  Other symptoms however, there are no such medications to even control them, for example, the trembling in my legs.  And although there are a lot of different medications to help control dizziness, unfortunately I have not found a successful tablet to control the dizziness or vertigo that I experience, especially since that one of the commonest side effects of many such medications is dizziness!

So, how should we cope with these untreatable conditions?  Surrender and give up? No.  We find ways that we can take control over our illness and its symptoms.  My good friend Marissa over at Abledis.com who writes about creating our own daily prescriptions as a way of taking back control over our conditions and more importantly to combat the depression that is very often a result of living with a chronic illness.

It’s a simple yet effective tool to increasing the quality of life that often diminishes when chronic illness takes hold on your life…and best of all there are no unwanted or horrible side effects!   It may also be a fun and unique way to not only make you take back control over life but also as a way of distracting yourself from the pain or other symptoms that medications does not seem to help.

 

Be your own GP! Prescribe some little treatments for yourself to raise spirits and distract you from symptoms
Be your own GP! Prescribe some little treatments for yourself to raise spirits and distract you from symptoms

 

 

So, what are some of the things that we can ‘prescribe’ ourselves to bring us comfort during relapses, or when we need to spend a lot of time in bed.  Here are some examples of the little things that I ‘prescribe’ myself when my condition becomes too unbearable to cope with:

  • Phone a friend – a good friend, someone who understands what I am going through and will offer sympathy and good advice.  Also important to choose somebody who is going to make you smile and laugh so you can take your mind off your problems if only for a little while
  • Watch a heart-warming or funny film – my top picks are ‘The Proposal’ starring Sandra Bullock and Ryan Reynolds; ‘The Blind Side’ another Sandra Bullock film and ‘Little Women’ starring Winona Ryder and Susan Sarandon
  • I always make sure to have Netflix also on standby as well as my iPad as thanks to new technologies I can stream films either from Netflix or even from my computer so means that I can still watch the films and TV programmes I love without having to leave my bed
  • Read an uplifting book; something light.  I would recommend ‘Chicken Soup for the Soul: Count your Blessings’ which contains over 100 stories of gratitude, fortitude and silver linings.  A perfect book to read when suffering a relapse as it makes you reevaluate your own life and appreciate the small things in life
  • A cuddle with a pet – my dog never fails at making me feel better
  • Practice meditation or other relaxation techniques – they really help you feel better and calmer
  • Listen to uplifting music
  • Keep a journal – a really cathartic way to release pent-up emotions
  • If you can sit outside and admire your garden or other surroundings
  • Pain your nails or give yourself a face pack – pamper yourself!

So, they don’t have to be big gestures or even something which is going to cost a lot of money.  Give it a go!

Any other things that you would like to prescribe yourself more time for?  What would you choose?  As ever would love to hear your thoughts and suggestions.  Comment below!

This prompt for the National Health Blog Post Month is all about what we would like to know but don’t.

For me, I would like to know more about the spastic paraparesis that plagues my life. I know the basics – it causes severe stiffness and weakness in the legs. But that’s about all I know about the condition, and something which wasn’t even explained to me by the neurologist whom diagnosed it – I had to learn about it from reading a letter he sent to my GP!! There have been some journal articles that I have come across which mentioned the condition in some detail however as it was from a medical journal it was very technical and a lot of medical jargon that I probably couldn’t pronounce let alone understand!!

Wordle: Spastic Paraparesis

Not even searching Google or other search engines have shed any more light on the subject; most of what is written concerns hereditary spastic paraparesis or tropical spastic paraparesis, which may be of some use but might not correctly explain the condition as it pertains to my individual circumstance.

It would be of use to know why I have developed the spastic paraparesis and how the condition itself relates to the long-standing brain stem lesion; how these two conditions fit together and causes the symptoms that I experience on a daily basis. In addition it would be of use to know the prognosis; whether it would be something which could deteriorate over time or which should remain stable for the remainder of my life. Signs which I should be looking out for which could forewarn me about possible deterioration – information such as this is vital for someone with a chronic illness; it gives the ability to plan ahead for the future and to make contingency plans if the worst case scenarios were to play out.

And lastly there is the case of the possible treatment options for the condition. From the little information that I have been able to gather regarding spastic paraparesis one of the options is physiotherapy. Unfortunately, after many sessions of physiotherapy with a neurophysiotherapist (a physiotherapist whom specialises in treating patients with neurological conditions) I was discharged as it was apparent that there was no improvement and the physiotherapy was not working. Neither the physiotherapist or my GP offered any alternatives to the physiotherapy and besides the medication that I take to ease the neuropathic pain I experience; therefore knowing alternative and all other treatment offers would be a must!

Pin It