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Multiple Sclerosis

What is a Spoonie?

24/07/2017 By Savanna Robinson Leave a Comment

What is a spoonie

As a person with Multiple Sclerosis I have often found myself in situations where it is difficult explaining just how I feel and what it can be like to have this illness. There have been many analogies used to describe this and other chronic illnesses, in particular the fatigue part. Some days I feel it is like trying to move my limbs through deep wet cement. But my absolute favourite would have to be defining myself as a Spoonie, based on the Spoon Theory.

Where does the term Spoonie come from?

‘The Spoon Theory’ written by Christine Miserandino  began as Christine’s way to explain her disease of Lupus to a friend. It uses spoons to describe the energy needed to do certain tasks during everyday life. Each activity uses a certain number of spoons. But unlike healthy ordinary people, a chronically ill person has a limited number of spoons available to them depending on their disease progression, fatigue levels, the weather and overall general health at the time.

wooden spoon

People with a chronic illness (such as MS, Lupus, and Fibromyalgia just to name a few) have to carefully plan out their day’s activities based on the number of spoons they have for that day. Once those spoons are used up, they are either borrowing from the next day’s supply (which can lead to a even worse day) or simply cannot do any more for the rest of that day. And so started the trend of people with chronic illnesses explaining how tough life can be for them using this analogy. Which has also resulted in many of them classifying themselves as Spoonies as Social Media took off. I’ve seen posts by many who get tattoos or collect spoon paraphernalia to help make others aware of their health.

bunches of spoons

Using the Spoon theory to explain how I am feeling on any day is a lot easier than any other way I’ve tried in my 12 years with MS. It allows my friends to know that even though I may keenly want to meet up with them, but that my body used up all the day’s energy on simply having a shower and washing my hair. They know on a low spoon today to not expect too much from me, as even mental processing is slower on those days. And it’s at those times that my dear friends keep a close eye on me to see I’m not pushing myself through it all and over doing it, as they know I’ll feel even worse come the next day!

spoons and mugs

So I’m proud to call myself a Spoonie! My disease doesn’t define me, but being a Spoonie allows me to share with others a little bit of what my life can be like.

Come follow my Pinterest board about Spoonies.

Leave a comment about your Spoonie experiences.

https://brighteyes77au.com/living-ms-day-life-mser/
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Filed Under: Health Tagged With: chronic illness, MS, Multiple Sclerosis

Living with MS – A day in the life of an MSer

18/07/2017 By Savanna Robinson 1 Comment

Hi! My name is Savanna and this is me living with MS. The MonSter which is Multiple Sclerosis. I’m also a Spoonie.

Not every person who is living with MS is incapable of walking and uses a wheelchair. This was the image that many people had when I was young and would do the MS Read-a-thon in school. (I know that’s what I thought all MS people were like at that age!) Now I know differently! Most MSers (people living with MS) look quite normal from the outside usually, as a lot of the symptoms are invisible. It’s hard to see numbness and sensory problems when you are just looking at a person.

Living with MS v2 pinterest womans hands holding cup

I’ve had 3 major relapses with my MS (even though the minor relapse of symptoms is quite significant to you still as a person, neurologists think they don’t count). I’ve never needed a wheelchair or cane to walk yet. I have had some cases of my walking being greatly affected though! Think waddling like a heavily pregnant lady and feet refusing to pick up off the floor at all! Enough that the Occupational therapist left me a walker ‘just in case’.

So here is a sample of 2 days in my life as an MSer.

Day A-

It’s hard to get out of bed as I rarely feel truly rested, especially with a toddler who still wakes occasionally at night. It takes an hour to get breakfast for my toddler and myself…my mind just seems to take longer times to process stuff in the morning. We go to a mother’s group playdate, where I get to chat with other mummy’s going through similar stuff with their child. But I spend a lot of time chasing my very adventurous girl. Lunch is had at home, right before her needing a nap.

I hope that she’ll go down for a few hours, as my MS nurse insists I should rest (nap) while she does, yet I still have a whole list of things I need to do while she won’t be constantly on my lap. I just manage to doze off when she wakes up.

More occupying the toddler inside (as it’s too hot outside for me)  and trying to do things around home. Welcoming my eldest daughter home from school.  Wondering if I have enough energy to cook something for dinner or if we have the finances to get take away. Bathing the toddler, getting her into bed…which still requires an evening breastfeed as she’s not convinced about this weaning business. Then trying to complete more tasks before bed, which probably won’t be overly late as I’m so worn out.

Day B

living with MS woman hooked up to IV with toddler plahing in lap

I’m in hospital to get IV steroids for a relapse that has been going on for over a week. I’ve had numbness/pins and needles in my legs up to my chest, and starting to get that duck waddle back again. My feet don’t pick up properly and trip over any uneven surface.

I’m afraid I’ll drop my 11 month old as my limbs feel weak. My reflexes test has hyper reaction to them…extreme jolting movement when they do the bottom of my feet. My muscles ache as it’s over 36 degrees Celsius outside, and even in the air conditioning my central nervous system just seems to know.

Living with MS hospital bed Jamberry catalogues
Hooked up to my IV steroids, and doing business stuff to keep busy.
living with MS cute baby playing with mobile phone cover
Juggling a toddler and time in hospital.

And from one day to the next, I don’t know if it will be a Day A with basically no symptoms, but still have to watch myself to not over do it as I’ll pay for that with fatigue later on. Or if it will be a Day B…or worse!

I find I still try to keep positive about it all, as there are worse things I could have than multiple sclerosis. And it’s not much of a life if always looking at those negatives. Life goes on, whether we like it or not! We may as well try to enjoy what we can!

I hope you now have a clearer idea of what MS can be like. Click here if you’d like to read about what is MS.

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Filed Under: Health Tagged With: invisible symptoms, MS, MSer, Multiple Sclerosis, Spoonie life, symptoms, what is MS like

What is MS? And what exactly does it feel like?

16/07/2017 By Savanna Robinson 2 Comments

What is MS you ask? It’s what I have! Multiple Sclerosis. Commonly abbreviated to MS (as multiple sclerosis is What is MS and what exactly does it look like post Ladies hands holding bunch of flowersrather a mouthful to say) or known as the MonSter in some circles. And those in the social media community with MS often refer to those with MS as MSers or PWMS (people with MS).

But what is Multiple Sclerosis?

What is MS and what exactly does it look like post- multiple sclerosis is

Multiple Sclerosis is the most common neurological condition in young adults. It is characterised by scars (lesions) in the central nervous system causing misfiring messages through the body, which is how it got the name Multiple (many) Sclerosis (scars). These lesions can be seen through an MRI of the brain and spine. They are still researching for the cause of MS and a cure for it, though there are quite a few modern treatments to help patients with multiple sclerosis to improve quality of life and reduce exacerbations. It usually makes an appearance between the ages of 20 and 40. About 3 times as many women as men get MS. For me it hit just before I turned 28, when my eldest daughter was 2 years old. What is MS

Now there are a few types of Multiple Sclerosis:
Relapsing-Remitting MS- An episode of symptoms occurs (the relapse) which then go away (remittance part) ether fully or partially. This is the most common form diagnosed and what I have at the moment.
Progressive MS- This type has a gradual progression of symptoms worsening with no improvement. It is labelled primary if you first present with this form, or Secondary if you have Relapsing Remitting and it changes to this over a period of time.
CIS- This is a recently new label replacing Benign MS. It is basically a one off episode of MS that usually never presents itself again. I’ve never personally met anyone online yet with this diagnosis. What is MS

There are so many symptoms that come with MS. But a lot of them can occur from other conditions too, so an MS diagnosis is not so simple! It can take anything from a few months, to many years as other things have to be ruled out first! What is MS

Multiple Sclerosis symptoms are also unpredictable. You never know from one day to the next what you might experience. And they can affect so many functions of your body. The five major groups of symptoms are Motor Control, Fatigue, Other neurological symptoms, Continence problems and Neuropsychological symptoms. There are so many symptoms within these groups that making a list of every symptom that every MSer has can take quite a while to make. And no case of MS is alike- it’s often referred to as a Snowflake disease, as the presentation in each person is unique. (This can make it incredibly frustrating when getting treated, as a lot of doctors have never seen a case themselves). What is MS

hand holding MRI of brain with multiple sclerosis showing white lesions

What does it feel like?

My first sign of MS was going numb from the butt down, which then travelled all the way up to my neck. It felt like I’d drop my toddler when carrying her at the time, even though I hadn’t actually lost any strength when they performed neurological tests. What is MS

Here’s a list of the symptoms I have personally experienced in my years of having Multiple Sclerosis. Remember all cases are different, so other MSers may experience some of these things, but might also have symptoms I haven’t had. I will try to explain each as I go along, as many have special names that really don’t tell you what it’s like.

  • Walking difficulties and foot drop – basically foot will not lift correctly up off the ground making it harder to move it forward to walk without stumbling
  • numbness and pins & needles sensation- there is not an area of my body that has not been numb during my relapses.
  • Pars Planititis (intermediate uveitis)- inflammation of the middle layer of the eye
  • Dysesthetic itching- deep itches from nerves misfiring that feels like bugs crawling over your skin
  • Uhthoff’s Phenomena -Heat fatigue- an increase in heat worsening previous symptoms…for me it feels like trying to move my heavy limbs through wet cement and has an intense deep down ache
  • Numbness
  • fatigue – beyond tiredness…even a good night’s sleep doesn’t make you feel any better
  • spasticity – of bladder and various muscle twitches
  • tremors- in hands when fatigued
  • twitches in eyes when fatigued
  • pain
  • intense heat or cold sensations through parts of the body
  • insomnia
  • dizziness
  • sexual dysfunction
  • speech problems
  • headaches
  • L’hermitte’s Sign – an electrical zap down your spine when you drop your head forward What is MS

I hope you now have a clearer idea of what is MS and what it can be like. Of course remember it can be completely different to this too!

If you’d like to read up on a day living with MS click here.

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Filed Under: Health Tagged With: MRI, MS, Multiple Sclerosis, symptoms

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