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Alternative Medicine

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Welcome to the tenth 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:

Alternative Medicine: Write about alternative treatments and regimens and tell us how you feel about them.  What do you support?  What is crazy? Have you used any? 

As my condition is neurological, and the dizziness is looking like it is being caused by a problem between the signals between my brain and eyes, then I am not so sure that alternative medicines would really work in my particular case.  I would not say that I think the idea of any alternative therapies however is ridiculous; if a person finds something that works for them and helps them to feel better in a world of chronic pain or illness, whether it be conventional medicine or alternative medicine than I think a person should be free to choose whatever works best for them.

Admittedly, when the anxiety and dizziness first started to become a major problem and an obstacle that impacted on my everyday life, I did try Chinese herbal medicine after someone recommended it to by Mum – sadly it didn’t work for me, but it wouldn’t stop me from trying it again for some other ailment or even recommending it to someone else for them to try – after all, our bodies are different from person to person and one treatment which works for person A, will not however work for person B.  I did however find that aromatherapy helped somewhat with the anxiety, and using lavender on a regular basis helped me feel calmer and less nauseous. I have just bought a little wheat bag and have hung it my bed to help send me to sleep, even when the dizziness and pain is stopping me from doing so, and has found that it has been doing the trick!

 

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My little lavender what bag – hung by my bed and complete with a little dachshund to remind me of Honey

 

Last week, I had a flare of my IBS symptoms, with bad cramping in my stomach, and a great friend suggested drinking peppermint tea.  I found that it instantly calmed my IBS symptoms, and the cramping instantly eased.  So although alternative therapies may not solve the entire set of symptoms caused by my neurological disorder, at least I have found something to help during flares of IBS.

 

Peppermint tea does wonders for my IBS symptoms
Peppermint tea does wonders for my IBS symptoms

 

As a lot of you may know that my symptoms such as the pain and trembling in my legs as well as the dizziness and vertigo has started becoming worse of late, and a few people have suggested alternative treatments such as seeing a Chiropractor or perhaps even attempting acupuncture.  Although I am not closed off from trying alternative forms of treatment, I think one of the worries of such treatments is the cost.  In Wales, receiving prescriptions is free, however alternative treatments are not offered on the NHS, and can be very costly.  For example, a friend of mine was spending approximately £90 a week on sessions with a Chiropractor, and perhaps one of the worries is the financial implications on using such treatments especially if they fail to work.

Next year, I am going on a cruise with my parents and am aware that they offer treatments such as acupuncture on board the ship that we are going on; perhaps I will give it a try – after all, isn’t one of the benefits of going on holiday is to try new experiences?

But for now, perhaps I shall stick to my own personal alternative regimens that for most part ease my symptoms, such as wearing a hat when out in my wheelchair.  I have found doing this ease the dizziness somewhat; blocking the visual stimuli that can make the dizziness worse, or even trigger an episode of vertigo.

One thing that living with chronic illness has taught me is that whatever helps us live with such debilitating symptoms or even eases them, then we should take full advantage of, however crazy they may appear or even what other people think…

Would love to hear your thoughts on this subject!  Have you tried any unconventional or alternative treatments in your quest to feel normal in the chronically ill world?  Feel free to post your stories and comments below…

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Being your own GP! (When medicines aren’t being effective or condition is untreatable…)

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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!

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Becoming Visible in an Invisible World…

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Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair
Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

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Fighting the Battle…

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Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

  • Dizziness
  • Stiffness and weakness in legs (Spastic Paraparesis)
  • Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on.  The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment.  The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth.  The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning.  However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already  been said that there is nothing that can be done, so it there much point in going?  Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through.  The isolation of being in a room by oneself, no-one to talk to…

Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….

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