Struggle

image

I don’t want sadness,
I don’t want pity,
I just want you to know that right now I am struggling.
I am in an awful amount of pain & my body won’t do what I want it to.

So for now, this is me, this is my MS.
Give me time, I will bounce back!

I am stronger than my MS! 👍

megaspecial.me
megaspecial.co.uk

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!

image

That moment when you just have to sit down

image

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!

image

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!

image

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!

IMG_2262-0
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!

IMG_2263

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!

fans

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!…

image

megaspecial.me
megaspecial.co.uk

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!

ms-heat

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!

c4164c96e96d0cc23e86ef01c610b4ba

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’ 

11294423_10207192261383910_848856621_o
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

nature reserve fatigued

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!

nature reserve vertigo 2

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.

a3618fdd0f378f10c38320c690825082

megaspecial.me
megaspecial.co.uk

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

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?…..