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worsening of symptoms

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I realise that I have been deathly quiet in regards to my writing recently but unfortunately I have been really struggling with well, everything.

I have been finding that the trembling in the legs is becoming increasingly worse.  Standing is becoming extremely uncomfortable and impossible to do for very long as I am feeling the severity of the tremors and the buckling of them whilst queueing or whilst completing the washing-up for example.  With regards to standing, it has been evoking anxiety as I am always afraid that they will suddenly give way, which has been happening to much embarrassment.  It was not until I was speaking to a person who has similar problems to myself, that using two crutches maybe more beneficial for myself than using just the one as it offers increased stability when standing and walking and reducing the risk of falls.  I loved the idea of being able to save myself from falls as because I have been experiencing so many of them my bruises have bruises!

The owner of the gym even kindly let me borrow a couple of the crutches that have been donated to the Feelgood Factory.  Unfortunately, after using them for a few days around the house and even once whilst out with my carer, I have decided that this option is not for me as not only have I found using two incredibly awkward and uncomfortable, they have also proved to be inconvenient.  For example, whilst in the house on my own, I was unable to carry my lunch from the kitchen to the living room as I had no free hands to spare!  It has also been found to be inconvenient when out shopping as I am left unable to pick items from the shelves or racks and therefore offers me less independent than using the one crutch as I am reliant on other people to do my shopping for me.  In addition, because of the dizziness I have always found that holding onto someone for support, such as linking arms gives me comfort and confidence when out and about and so using two crutches also prevents me from having the support of another person.

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So, I now have to make a decision to make whether to start using the wheelchair on a more permanent basis; although I do not always feel comfortable in using one because of the dizziness and vertigo, it has been put to me that because of the increasing severity of the trembling as I have stated above and the increased number of incidents of falls then it may be the time that I need to start thinking of using it for the majority of the time when I am outside of the house.  This is not only to keep me safe from further injuries, but also prevents my falls from injuring others or even from falling and damaging items that are on display in the stores that I visit.  It is not an easy to decision to make; for anyone it is difficult to admit weakness and further to admit that you need help.  It’s difficult to accept that my legs are getting worse and further that I may need further support such as the wheelchair to be able to get around when out of the house.

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Fatigue has also been a big problem for me also.  As the pain and trembling have been bad during the nights, sleep as a result has been limited and thus leaving me exhausted through the day.  Naps has been my best friend lately and have found myself falling asleep during the afternoons.  These naps are more frequent and last longer after days where I am out and about I have also noticed.  Fatigue not only leaves you feeling absolutely exhausted but also leaves you with little energy (or in our case ‘spoons’) to be able to do things that we would ordinarily do with ease.  Completing one circuit of the gym has been extremely challenging, whereas before I could complete two with ease.  Chores has left me unable to function for hours.  Not only it has had an effect on my energy levels either.  It has also had an effect on my mood – not only have I been snapping with very little provocation but I have also been feeling very low.  I would not say it’s depression but am just generally low in mood.

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In other news, I finally have had an appointment with the neurology consultant for early next month so I am hoping that all of the test results that I have had done over the past few months have found something, or there are ways in which they can help me and improve my overall quality of life.  When things are bad such as what I am experiencing at the moment, it can often seem as if we are just existing rather than living; if we are just going through the motions or living on autopilot but I am determined to continue to fight my way through the bad patch and find my silver lining…

Tweet: When things are bad it can often seem as if we are just existing rather than living http://ctt.ec/b30e0+ via @serenebutterfly #spoonie

Hello, Everyone!

I hope you are doing well and are AWAP (as well as possible!) and I hope that everyone has been able to enjoy the great weather we’ve had (granted, for those of us in the UK, it’s only been a week or so!). Anyway, although it has been delightful to see bright blue skies and the feeling of warm sunshine on my skin, the hot weather and particularly the humidity at night has been playing havoc with the symptoms which I experience.

For example, Monday I had the opportunity to sit in the beautiful gardens at the Centre for which I volunteer, and after only a short time the dizziness and vertigo which I experience daily were incredibly intense, leading to visual disturbances and incredible nausea as well as deep aches and pains in my legs.

And last night was one of the worst nights I have experienced for a while.

It was so warm and humid in my bedroom, and unfortunately for me, I also had a guest in my room – my dog Honey! And believe me, this didn’t help the situation!

Due to the humidity, it was incredibly difficult for me to get to sleep anyway, especially with the cramping and deep pains in my legs, but somehow I did manage to drop off sometime during the night.

Honey looking angelic keeping cool – complete opposite of her antics last night!

But alas, was awoken around 2.30 by the dog, crying and heavily panting – seems I wasn’t the only one that is having trouble with the heat, and hampered by my bedroom which always seems to get very warm.  And after that was unable to fall back asleep due to the severe stiffness and pain in the legs as well as the violent dizziness and so spent the early hours of keeping myself occupied by listening to music and watching episodes of ‘Grey’s Anatomy’ and ‘Once Upon a Time.’

But a question that might you be thinking is why does the heat affect those with neurological conditions so much?

Well, the reason for this is in many neurological conditions the nerves are damaged or the neural pathways which slows the ability of the nerves to function and send messages to the appropriate part of the body.  Heat can further slow down nerve impulse in affected areas such as legs in my case. And this is the reason for increased symptoms during the hot weather.

 

Image: She Radiance.  A Magazine by Ayushveda 

So to ward off increased symptoms and those of heat intolerance it is vital that those with neurological conditions such as in my case, or those with MS, keep cool during these warm Summer nights.

And what steps can we take to ensure that we do not relapse or our symptoms become worse or find ourselves unable to sleep because of them?

 

Suggestions for keeping cool and being able to sleep comfortably on a hot night: 

  • If safe to do so leave a window open in your bedroom to increase the air circulation in the room.  Multiple windows facing different directions to admit breezes is even better.
  • Set up a fan – if you are worried about the noise emitted by fans, consider buying a large fan or even a ceiling fan which tends to move air with less speed and noise
  • If you are unable to open a window, consider using a fan and ice to mimic air conditioning if it is unavailable.  Buy a commercial bag of ice and empty it into a shallow container (to contain the water as the ice melts).  Place the bowl of ice directly in front of the fan (between the fan and you), level with the top of the bed
  • Keep your neck cool! It works the same way as keeping your feet cool.  Try using a cooling pack that works for you, or place a damp towel on your neck
  • Consider using the ‘Egyptian Method’: wet a sheet or bath towel that is large enough to cover you with cool or cold water, and wring it or run it through the spin cycle on a washing machine until the sheet is quite damp but not dripping wet.  Or you can use a spray bottle of water to spray the top sheet until it is damp but not soaking.  Place the dry towel or sheet underneath your body and use the wet sheet as your blanket.  The wet blanket will help keep you cool.
  • During an extreme heat wave take a light t-shirt and wet it, wring it and then wear it.  Evaporation from the shirt will help to keep you cool enough to sleep for a few hours
  • Take a pair of cotton socks and rinse them in cold water, wring them until they are damp and put them on.  The cooling of the feet lowers the overall temperature of your skin and body
  • Chill your pillowcases: put your sheets, blankets, and pillowcases into freezer bags and place it in the freezer all day.  Doing so can help you fall asleep faster, further reducing your exposure to the uncomfortable heat
  • Sleep in a ‘spread eagle’ position, so heat doesn’t gather around you
The ‘Spread Eagle’ Position
  • If it is a terrible night for you, sleep downstairs – warm air rises, so it tends to be cooler downstairs
  • Take a cold shower or bath before bed, or if this is not an option splash some cool water on your head and feet – this will help you keep cool for longer allowing you to fall asleep faster

 

These are some of the examples of keeping cool during those unbearable hot summer nights.  Have you got any other tips?  Please leave a comment with any other suggestions!

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