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

Constraints of my MS

HEAT

COPYRIGHT Vix quote

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 

Vix vision of reserve

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: Cog-fog

‘COG FOG’

I’ve spoken about PAIN, I’ve spoken about FATIGUE, now its time to speak about ‘COG FOG

“Cog Fog” is a term generally used to describe the confusion, disorientation, general grogginess, and other issues resulting from cognitive dysfunction which commonly occurs with MS.

What can Cog Fog effect?

  • ability to use and understand language

  • concentration

  • thinking

  • reasoning

  • problem solving

  • recognition of people and places

  • ability to learn and remember new things

  • ability to plan and execute plans

  • ability to judge distances

  • multitasking

  • prioritizing

Brain Fog

Have you ever found yourself in a situation that requires you to use a massive amount of brain power.

Counting… do you save your spare change in a money-box?

Remember those days when we had to count our own coins, before the days of taking it to a machine that counts it for you but only gives you a percentage of what you actually put in!

You want to treat yourself to something really nice but you have to count all those coins yourself before you know if you have enough money!

How about a flat pack piece of furniture that requires assembling, how are you at putting those together? I used to be brilliant!

What ever you find challenges your brain, keep that in mind.

Now imagine you are trying to do that task but you have some very bored children around you that are constantly trying to get your attention, you can’t take your mind off the job in hand but they are so distracting!

Ok, now imagine you’re in a really noisey environment! Lets say a pub & England are playing in the world cup, plus the job your trying to do and the board children that won’t stop nagging.

Someone shouts your name but you can’t stop! You know that as soon as you take your attention away from your task, you’ll forget where you got to & will have to start again!

They keep shouting you, the crowd in the pub are so noisy you can’t hear yourself think. The children are nagging, you start to lose your focus! It won’t stop though! You can’t stop, kids nagging, someone shouting you. You rub your eyes, your heads going fuzzy! England score! What were you doing? Did your head explode!

Now times this by 10 & your half way there to feeling what its like to have MS ‘COG FOG‘ or what I occasionally call a ‘BRAIN FART’

Don’t forget that whilst all the above is happening, you also have that pain I spoke about & the fatigue!

Both of those can make the ‘COG FOG’ worse. So the more pain I am in & the worse my fatigue is then the my ‘COG FOG’ is heightened!

I might forget where I am,

I might forget the way I am going even though I’m in a corridor with only one way out! (Yes that has actually happened)

I might forget your name,

I will probably forget what I am talking about & in so many occasions I actually just stop talking!

You’ll see me just stop talking mid sentence & look at you blankly as though I’m waiting for you to say some something!

This is Cog-Fog!

Cognition and cognitive symptoms

About half of all people with multiple sclerosis have some degree of problem at some time with aspects of thinking – memory, attention span or concentration. Cognition is the term that covers all aspects of thinking and these symptoms are referred to as cognitive problems.

For most people the symptoms are relatively mild and like other symptoms can fluctuate from day-to-day, worsen during relapse and improve during remission.

As with physical symptoms, not all people with MS will experience all of these problems. Cognitive problems can be made worse by some medications, including those used to treat pain and depression.

Many people may not recognise cognitive symptoms as an aspect of their MS and they can arise early in the course of the condition although the greater the disease duration and severity the more likely problems are to occur.

Whilst frightening, cognitive changes are generally mild and management strategies can provide effective methods of lessening if not eliminating the functional effects.

Common cognitive problems

Memory

Many people with MS report that their memory is not as good as previously. Memory difficulties are primarily related to the recall of recent events or information and forgetting to carry out planned actions in the future. Both these situations lend themselves well to using systems to record information and to act as reminders or prompts, eg diaries, notice boards or mobile phones.

Information processing

This problem is described as experiencing difficulties with being able to follow a series of complex, instructions, especially if the information is given rapidly.

Problem solving

This may arise as the result of an individual being so agitated and anxious about a task, that they are unable to mentally structure their thoughts to instigate a series of separate actions. Consciously breaking down a task into simpler steps or stages can allow progress.

Word finding

Also called ‘tip of the tongue’ phenomenon, this is a recall problem rather than the loss of memory for that word.

Concentration and attention

This tends to occur when a lot of information is being delivered to a person at once and only some is relevant, for example where several people are talking at once.

Management of cognitive symptom

Management of cognitive symptoms often involves finding strategies to minimise the effects of symptoms, and sometimes a retraining approach whereby progressively more challenging exercises are given to strengthen impaired function. Management often involves psychologists, speech and language therapists and occupational therapists.

Compensatory strategies that might be used include:

  • establishing a fixed routine, eg always keeping things in the same place
  • using a large page-to-a-day diary and developing the habit of consulting it
  • prioritising tasks to do only one thing at a time and removing distractions (background noise, TV, etc.)
  • using technology as a memory prompt eg dictaphones or mobile phones
  • avoiding jobs which need concentration when fatigued or anxious

I find that my cog-fog gets worse with anxiety, exercise, heat, pain & fatigue!

#GOOB

Yesterday was a really busy day for me!

Lots of people chatting with me about the MS news headlines

‘Miraculous Stem cell treatment’

Such brilliant news but I really don’t want people being misguided into thinking its a cure, I’ve attached a link to what the MS Society have to say

Getting the facts behind ‘miraculous’ stem cell treatment headlines

http://www.mssociety.org.uk/ms-research/research-blog/2015/03/getting-facts-behind-miraculous-stem-cell-treatment-headlines


 

 

Believe it or not, that’s not my main reason for writing this blog today!

 

So, I’ll get back to #GOOB

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My day started as normal as any would. Knowing in my mind what I had planned for the day, I sat down with my breakfast and my iPad and started checking my notifications I had received the night before.

The first notification I saw was from a close friend ‘Toni’ telling me to turn ITV on. Then another message came through from my Dad telling me that the ‘Good Morning Britain’ show on ITV were about to interview a lady that had undergone Stem cell treatment for her MS and I should put the TV on. As soon as I read this the home phone started to ring! It was my friend ‘Toni’ checking I had received the message about turning the TV on.

Click on this link to watch the video clip
Good Morning Britain ‘Holly Drewry’ interview about multiple sclerosis stem cell treatment walk

That’s when my day started to get really busy!

Social media sites started to buzz with the talk of this ‘wonder cure’ Friends were asking me about it, I said the same to them as what i started this blog with….

‘Miraculous Stem cell treatment’

Such brilliant news but I really don’t want people being misguided into thinking its a cure, I’ve attached a link to what the MS Society have to say

Getting the facts behind ‘miraculous’ stem cell treatment headlines

http://www.mssociety.org.uk/ms-research/research-blog/2015/03/getting-facts-behind-miraculous-stem-cell-treatment-headlines


 

 

 

I know I have just repeated the article from the beginning of the blog but I do feel this is a very important message to get across.

Another topic that I was involved with on Facebook was about a photo that had been added to the group ‘Nuneaton memories’ It was an old photo of my families health food and ethnic fashion shop ‘Way Of Life’ before the business was sold in 2000.
I’ve decided after seeing all the lovely comments about ‘Way Of Life’ that I am going to start a new project. I’m going to write about the business from when it started as a market stall in the early 80’s to the very last day! If I can find photos then I shall add those as well.
If my long-term memory ever fails me like my short-term does then I’ll have a forever memory in my new project!

It was whilst chatting about the family shop, the MS news and researching it in more depth that I realised the time! 12:15!
I was going back to a Pilates class after not going to it or any other fitness classes including the Gym for over a week due to sickness! You can imagine how excited I was to be able to go back!

12:15 I was still in my PJ’s, hadn’t had any lunch and hadn’t checked through my gym bag to make sure everything was in there that I needed! You know like the important things!
I got myself some lunch and mistakenly continued with the social media conversations! This is always a big mistake as I do tend to get lost in them!

13:00 the phone rang, it was my partner calling me whilst on her lunch as she does everyday. I explained I wasn’t dressed for Pilates & at the same time I looked at the clock, 1pm! It was 1pm and the only thing I had done in 45 minutes was have lunch! Oh dear! This was the time I should have left to make sure I arrived at the leisure centre to meet my friend and be in time for the Pilates class.

Now for anyone that knows me personally you will know how stressed I get when I have to be anywhere for appointments, it’s all down to the time restrictions. This is also the case for classes, so Pilates, I leave early to allow for any traffic delays, Aqua fit is further away so I leave extra early and usually end up sitting in my car for ages!

So imagine how I was! I always say I’m getting ‘in a flap’ Well, if I was in any more of a flap my feet would have left the floor!
I finished the phone call with my partner and rushed around like I was on fire! I always think that the more you rush the slower you are as you make more mistakes! When I’m in a flap I never think to slow down & remember this!

I got my self ready, sorted the dogs and grabbed my gym bag… oh no! My membership card that I need to enter the gym, wasn’t where it normally is! I hadn’t checked when I first got up!
I emptied all my bags & different purses looking for my card. I couldn’t find it anywhere!

13:25 The Pilates class starts at 13:30! I had 5 minutes to get to the leisure centre which is easily a 10 minute drive without traffic! This was so not me! I’m like Sheldon from ‘The Big Bang Theory’ when it comes to situations like this! How could I get there and to the class in time! Knowing it was impossible I still continued to make my way out of our Bungalow!

13:30 It always happens when you’re in a rush, the refuge bin collectors where on their routes which just happened to be the same direction that I was going! Well, if I had no chance of getting there in time 5 minutes ago then I was most definitely going to be late! I remember thinking, what do I do? This was a whole new experience to me, remember ‘I am Sheldon’ shall I pull over & phone the leisure centre so I don’t get charged for not turning up?
I carried on! Again a new experience, not phoning to tell them about my lateness! What a rebel!

13:40 I finally arrived in the leisure centre car park! 10 minutes late! I’m never late for anything! I felt like crying, I was already feeling sensitive because of going down memory lane earlier on with the comments about our old shop.
My friend’s car was there, she must have gone straight in.
I stood at the ticket machine for the car parking & felt my eyes well up! Something incredible happened next, I started to asses the situation. For the first time I actually changed my thoughts from feeling angry with myself to deciding how I could make better this situation. I was definitely too late for the class, I wouldn’t be joining in with Pilates today, that was for sure. I still had to go in to the centre to explain about being late, I had to apologize at the very least plus I needed a new gym card after losing the original! I may even have to pay for the session (I am a member so the cost of session is all in with my monthly charge. Unless you fail to attend the class without warning)
Decided then, I would go inside! I got my car park ticket and made my way into the centre all the time thinking about Shift.ms

13:45 Yep I really was late, I explained to the lady at reception that I was late and I needed a new card. She offered for me to carry on into the class at which I declined, the class was by now 15  minutes into the session. Me walking in so late would have been very distracting, something I know I wouldn’t appreciate if it happened to me.
The receptionist said I wouldn’t have to pay and she didn’t charge me for a new card either *hush-hush*

 

This is when #GOOB happened!

 

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I thanked the lady on reception, what a lovely kind thing to do for me. I then asked her if the card was active? It was, perfect!

I then made my way up the stairs and into the changing room to put my bag in a locker. I then left the changing room, straight past the dance hall where Pilates was and into the gym!
I spent 45 minutes in the gym working on my balance and then made my way back to my car where I sat and waited for my friend to come out.

When I saw ‘Mummy Crispie’ walk towards the car, the look on her face was just brilliant! She was obviously confused about why I was sitting in my car and hadn’t gone into Pilates. I explained everything to her and we sat chatting for at least 20-30 minutes. When I say we ‘sat chatting’, Crispie was in her car with window down & I was in my car with window down of course. This really tickled me and kept me smiling during the journey home.
(Crispie is a nickname for my friend Christine who I have known since I was 4! She is my best friends Mum!)

Crispie seemed really impressed when I told her I went into the gym instead. I felt really proud of myself!

This was definitely my #GOOB! Making Good Out Of Bad!

 

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Thank you Shift.ms for reminding me that it only takes a small change to the way you think to make

good out of a bad moment

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Here are some visuals from the Shift.ms web page that I really like and help me to stay positive…

Just change the Yoga for Pilates and this is perfect for me!


I have done this but i think I may to look at it again, maybe that way I won’t be late in future!


Shift.ms aims to create a positive, enabling community for MSers which empowers them to acknowledge their MS, rethink how to achieve their ambitions and get on with their lives.

Antioxidant Reverses Multiple Sclerosis-Like Disease In Mice

“There may be a cure here so we have to keep ourselves well and happy so we are in the best position possible when the cure arrives. Stay happy negativity is not needed or wanted.

Be strong! Read ‘ Paying the Price‘ and we will win this war!!!!”

Shared via Stephanie Millward British Paralympic swimmer.

http://www.medicaldaily.com/antioxidant-reverses-multiple-sclerosis-disease-mice-265961