That moment when you just have to sit down!

You have to laugh don’t you! I started writing this last week during the heatwave & completely forgot all about it!

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That moment when you just have to sit down

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My MS really doesn’t like this English weather!

It’s been another beautiful day and I’ve unfortunately been a very busy girly again!
It would have been so nice to have sat in my egg chair and enjoyed the sun especially as the humidity wasn’t too bad this morning!

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That wasn’t planned for me today though!
I knew I wouldn’t be able to go back to Pilates just yet after passing out during Wednesdays class! So I had booked our 12 year old Labrador Olivia (Ollie for short) in at the vets for further investigation into a lingering UTI (Urinary tract infection)
At least by booking this appointment I knew I definitely couldn’t go to pilates, this was a very important appointment!

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I also had to go into town today to collect some clothes Deb had ordered & pay money into the bank. No worries, in & out in no time

Famous last words! The que in the bank was horrendous, I knew I wouldn’t be able to stand for too long and so as usual I managed to find something solid I could lean on whilst I waited.
It was so warm in there though! I could feel my temperature rising so I grabbed my little fan out of my bag! That did the job! I love the summer but I wish my MS did too!

Off to collect Debs clothes, the shop in needed is in a Shopping Mall, oh no!  The Shopping Mall has a glass rough! I knew just what that meant!
I could feel the heat from the sun beaming down on me through the glass! The more I walked & the weaker my legs felt!

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Oh here it comes! It’s ‘the’ MS walk, you know the one that leaves people wondering if you’ve had one to many Brandys!

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Weaker & weaker, I’ll be crawling soon! I’ve passed the benches & the cafe’s! The shop I need is closer than turning back! Come on legs, don’t let me down!


The automatic doors open & I could feel the coolness from the AC!

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The shop assistant welcomed me & I explained I was there for a collection but I also wanted to browse. I grabbed a handful of clothes & headed to the changing room! I knew this place well & knew there would be a seat in that changing room! That’s all I wanted, to sit down!

So much better! I smiled & realised the clothes I had grabbed were actually a size too small!
Then I remembered what I received last night!…

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Don’t be suprised if I don’t cheer for the heat of the sun

Constraints of my MS

HEAT

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Most MS’rs, myself number 1 on the list, just can’t stand the heat of the sun! 

MS & HEAT

Don’t get me wrong, I love to see the sun! Everyone smiles when the sun comes out to play but MS generally HATES heat of any kind!
Heat for me brings out all & I mean all of my symptoms worse than ever!

MS & Heat

It makes me sluggish, it enhances my fatigue ten fold, it enhances my pain & because my fatigue is worse that means I can’t cope with my pain and so pain appears worse!
It gives me eye fatigue! Yep, eye fatigue which then means my vision suffers!
And if you hadn’t guessed, it makes me cranky!

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I’m sorry I’m negative about the sunshine but these things you need to know!

When the sun shines all I really want to do is curl up into a ball & sleep in the coolest place I can find!

So many people get so happy to see the sun & feel it’s heat! Please don’t be surprised if I don’t smile as much when it’s hot outside! Just know that I feel your love for the sun & wish I could be as enthusiastic about it as you but I just can’t!

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I’ve come up with some pictures to help show people how MS affects my vision, please remember though that everyone’s MS is different.

An example of someone who has normal vision looking into my back garden or ‘Fugly Manor Nature Reserve’ 

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An example of my normal vision after damage left from optic neuritis 

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An example of my vision when it’s too hot for me

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Uhthoff’s phenomenon

Uhthoff’s phenomenon or Uhthoff’s sign is the temporary worsening of symptoms – most often visual symptoms but sometimes motor or sensory – caused by an increase in temperature. The visual symptoms may present as double vision, sharpness of vision, or black spots in the eyes.

The symptom takes its name from Wilhelm Uhthoff, a German neuro-opthamologist, who first described it in 1890

An example of what follows if I continue to get too hot!

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Dizziness and vertigo

Dizziness or lightheadness is a common symptom of multiple sclerosis. If the sensation is more severe and gives the feeling that surroundings are spinning, it is referred to as vertigo.

In MS, these symptoms are caused by damage to areas that co-ordinate perception and response to visual and spatial information.

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Constraints of my MS: Fatigue

Constraints of my MS

The last part of ‘Constraints of my MS’ was

about PAIN & all the medication I take!

With that in mind, my next part talks about…

FATIGUE 

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Fatigue

Fatigue is one of the commonest symptoms of multiple sclerosis and can often have a major impact on people’s lives. The level of fatigue does not reflect the severity of someone’s MS and people can experience fatigue that interrupts their daily life or that prevents them from working, whilst having no other symptoms.

Fatigue is very different from the tiredness or exhaustion that people without MS experience following strenuous exercise or a busy day at work. Fatigue is described as interfering with normal activity and being out of all proportion to any activity undertaken. It is often involves the sudden loss of energy and the inability to continue an activity. MS fatigue can not be worked through, as can sometimes be done with non MS fatigue, and recovery time also tends to be much longer.

Fatigue does not relate to relapses, nor to any permanent increase in disability. Previously experienced MS symptoms may get worse during fatigue but reduce again after rest. Fatigue can also affect cognitive symptoms such as short term memory, concentration or word finding. People report that it is harder to ‘think straight’ when they are fatigued.

As an ‘invisible’ symptom of MS, fatigue is sometimes not properly understood by family, friends or colleagues, who assume that the person with MS is depressed or just not trying hard enough. Fatigue is a major cause of early departure from the workforce.

Once again, I take medication for my fatigue which help by keeping my MS’y symptoms from getting worse throughout the day and help to keep me awake past 7pm!

Now, my fatigue is not only a symptom of my MS but it is also a cause from the cocktail of medication that I take!

I recently reduced the amount of Pregabalin from the highest amount of 600mg a day to 400mg day. I decided to do this so I could try & get a bit of brain function back instead of feeling as though I am in a daze 24/7 with my head in the clouds – also known as ‘Cog fog’…..

You look like crap on a cracker!

Always the same old thing we get told!

Does it get tiresome?

I had to share this one, I think it’s probably the best one I have seen because we ARE awesome!

We have to be awesome just so we can listen to people telling us how well we look!

Besides I wouldn’t want people to tell me that I look like crap on a cracker even though u can guarantee I would be  feeling like it!

Would you?

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Ease MS Fatigue

The Egg Chair

Suffering terribly with MS Fatigue I went on the search for some natural help! Let’s see if this helps!

Firstly, they must have a camera on me when it comes to ‘Munching on a candy bar’ or as I like to call it… CHOCOLATE!

Secondly, when sitting in a chair looking up at the sky or tree, make sure you don’t get dizzy like me!

The best thing I find to help with this is an ‘Egg Chair’ you don’t fall out of it! (See photo) 

GOOD LUCK

A Simple Breathing Exercise to Overcome Fatigue and Revitalize

Written by Jing J.

When you feel tired and fatigued, what do you do? For those of you whose natural tendency is to munch on a candy bar, hoping it’ll give you some energy and make you fell better…

Your instinct may actually be right. When you feel fatigued, your blood sugar level is probably low. Your body needs either more nutrients or oxygen to support its metabolic activities.
In this post, I want to share a simple breathing exercise to help you revitalize yourself without the risk of gaining weight by eating sugary snacks.
Here’s how…
Sit in a chair, preferably outdoors. Look up in the sky or at the top of a tree. Since we are going to fill up the vital energy center of your lower abdomen, you want to look at something over your head.
Take a deep inhaled breath, and try to draw the air all the way down to your lower abdomen if you can.
Hold the breath for a count of three.
Then release the breath slowly and gently. Make sure you exhale completely, emptying out the last drop of air in your belly. This is to release and detoxify the stagnant, waste energy inside of your body.
Repeat the breath cycle 5 to 25 times, and you’ll certainly feel reenergized and revitalized. Practicing this simple breathing exercise every day can help overcome chronic fatigue and enhance your vitality.
So next time when you feel tired and you’re about to reach out and grab a candy bar, try this exercise instead. Let yourself be nourished by the natural, abundant substance of the universe.
– See more at: http://www.cycleharmony.com/reme-dies/mind-body-healing/a-simple-breathing-exercise-to-overcome-fatigue-and-revitalize#sthash.crUg8I1X.dpuf