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: 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’…..

Constraints of my MS

Constraints of my MS

At the moment I feel I am doing very well with the acceptance of my MS.

Unfortunately this is such an unpredictable disease which I think makes it impossible to say that I have accepted every part of it.

Not many people know a lot about MS, I know I didn’t before I was told I have it.

I’ll explain a little about my MS. I say ‘my’ MS because not one person who has it is the same as another. We are all completely unique with our MS although the symptoms that we all have can be similar.

Now I am going to talk about one certain topic here but for you to understand I will have to go into detail about other symptoms which I will explain briefly with the aid of:

PAIN

Pain is only one of my symptoms!

This is probably one of the biggest things I have had to and still am learning to cope with!

Why do I have pain?

Pain

More than half of all people with multiple sclerosis will experience pain symptoms at some stage.

Pain can be defined as unpleasant sensory experiences. In MS this may encompass both ‘painful’ feelings and also altered sensations such as pins and needles, numbness, or crawling, burning feelings (known as dysaesthesia).

No two people will experience pain in the same way; it is very subjective and is best described by the person experiencing it.

Types of pain

There are two broadly recognised types of pain in MS:

Neuropathic pain

Also known as nerve pain, this is thought that this arises as a direct result of the damaged to the covering of nerves interfering with the normal transmission of information to the brain. However, the origin of most nerve pain is not fully understood. Examples of neuropathic pain include trigeminal neuralgia, an intense painful sensations in the face, and Lhermittes sign, sensations like electric shocks in the neck and spine.

Musculoskeletal pain

Also known as nociceptive pain. Nociceptors are pain receptors found throughout the body that respond to injury and inflammation. They send messages to the brain that are perceived as pain, usually in the joints or muscles. This type of pain is not directly related to MS, but may be worsened by it; for example, musculoskeletal pain can arise as the result of spasms or abnormal pressure on the muscles and joints due to changes in posture, typically in the back or hips.

Yes I take medication for it!

I’ve tried many different types of tablets, I’ve even tried holistic medicine like acupuncture which I find brilliant for relaxation but unfortunately the effect has never lasted long enough for me to use it as a regular way to self-control the pain.

So instead I have opted to continue with my cocktail of medication such as Pregabalin, Nortriptyline & Duloxetine

If you have clicked on the link for Duloxetine you will notice it is taken for depression, that’s a whole different topic which I’m sure I’ll speak about at some point!

So with my lovely cocktail of super strong neuropathic pain meds can you guess what my next biggest problem is with my MS?…..