Back ‘on it like a car bonnet’

Back to it today after a week recovering from my back procedure-surgery-thingymebob

Looking forward to it! Just one thing, it’s a different instructor & my MS Anxiety doesn’t like change!

Bring it on! One more thing for me to overcome! I can do this! Sticking my tongue out to the alter ego ‘MegaSpecial’ in me! She will not win! 👅

#strongerthanMS #MegaSpecial #megaspecialinme

Belated MS Fact Friday & Constraints of my MS ‘mash up’

I realise I forgot to post my MS Fact Friday picture yesterday so I shall do it today but with the aid of… me! No picture! Vix MS Fact Friday & Constraints of my MS ‘mash up’

The fact is, I have an excellent memory! Honestly! I don’t know why those that truly know me are laughing! I do! 😄

I can tell you every tablet I take, I can tell you every tablet my partner takes, I can remember my bank details and my gym membership details. The license plate of our cars old & new, part of my dad’s license plate & some of my friends! I can even remember people’s phone numbers! Who needs to remember those when we program them into our phones now & just press the call button!

So why is it that I have no memory of people’s faces, names, programs or films I’ve watched, places I’ve been or even how to get there and so many other things!?

My Granma moved to a care home 18 months ago to an area I know well, I try and visit once a week & I can still get lost getting there or even on my way home!

On my last visit to see my MS consultant I told him I was concerned about my memory. The silly thing is I told him this after telling him my current medication from memory! Yes memory!
He laughed and said Miss Edwards you have an excellent memory, it is concentration that you are experiencing problems with!

I related to that! Of course he was correct!
If people are talking to me I like to make sure I’m not distracted by other things, I have to mute the stereo or TV.
If there are more than one conversations in the same room, you can forget me engaging in any of those conversations!

Likewise, when I am at a pilates class I need to make sure I am at the front of the class or that I can at least see the instructor clearly without distractions otherwise I’d be getting all of the moves wrong, ha, I’d probably just make them up!

So my belated MS Fact Friday & Constraints of my MS mash up is Concentration!

Take a look at this video, it isn’t about MS but instead about a bicycle that has been rigged up backwards.
I can really relate to it because since my MS has developed I find that I have to relearn simple tasks on a daily basis, especially when it comes to technology, something that I have always loved and been able to do without even thinking about it.
These days it takes me half the day to do the simplest of tasks! Not just to relearn how to do it but before that I’d have to put the kettle on, tidy a bit of the kitchen, dry the washing up, make a cup of tea, put the towel on a radiator, whilst putting the towel to dry I’ll probably notice the damp clothes waiting to also be put to dry so I do that. See something that needs to be put back in the kitchen at which point I notice the fridge is still open, milk is out waiting to be poured into the tea that has been brewing for so long that the water is cold! Remake the tea!
Now I will have forgotten what I was relearning as I wasn’t concentrating enough on the task at hand!

I haven’t however forgotten that I was sharing this video with you!

Enjoy!

http://mindtest.co.uk/the-backwards-brain-bicycle/?s-df&-20150523&t-0000

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!

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 

IMG_20150501_085248

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’…..