The blogger that can’t write, the artist that can’t create & the Pilates advocate that can’t practice


This is where I am now but I can’t walk well and definitely show the pain!

I’m quiet because it hurts. Everywhere hurts so much, it’s a pain like no other and nothing stops it completely.
My mood is the lowest it has been in a long time, it’s expected when I’m struggling to manage my pain.

Normally I would be using exercise to help with my pain but I’m having to take some time off that.
I started to experience funny sensations in my feet which, over 2 weeks have crept up both of my legs.
Around the same time this happened I found my legs were getting weaker, I have now adapted my walking ‘gait’ to suit how my legs feel. My feet are now wider apart for stability & my legs although weak are also a lot like I imagine wooden legs to be, stiff!

So after speaking with my Neurological Physiotherapist I have been advised not to exercise at the gym & no pilates classes for a while.
It’s time to give my body a rest & not make it harder for it to recover. It seems more & more likely that this is a relapse!
Like my Big Sistaaah of the MegaSpecial variety says: just when we get our lives back on track our MS flares up & reminds us it’s still there!

The 'Foot ups'
The ‘Foot ups’

I have to wear my ‘foot ups’ full time now as well, even in doors! They help me to lift my toes when I walk, this problem that I am having is called ‘Dropped foot’

Foot drop

Foot drop, or dropped foot, is a symptom experienced by some people with multiple sclerosis. It is caused by weakness in the ankle that means the foot drags along the ground or hangs down when walking. People with MS with foot drop are more vulnerable to tripping and falling. Walking also uses more energy and people may alter their gait to compensate, commonly lifting their leg higher.

Foot drop can be treated using functional electrical stimulation (FES). This uses small electrical charges to force the foot into a more natural position for walking. An ankle splint (orthosis) can also be used to hold the foot in a rigid position.

These are the days that are the longest! I can’t exercise, blogging is extremely hard as I’m lacking concentration & can’t do my art without falling asleep!
It’s a good job my artwork is digital otherwise I’d be waking up with paint all over my face! Instead I just wake up with ‘qwerty’ across my forehead!

I’m the blogger that can’t write, the artist that can’t create & the Pilates advocate that can’t practice.

*It has taken me literally all day to do this short blog!*


Goals are set



I Seriously am feeling so proud of myself!
At home I’ve been practicing different exercises that we do during Pilates, in particular the stretches shown above & today I nailed it!

I managed to hold the stretch on the right (‘Tree’) for nearly 45 seconds & I felt as though I was really strong! The stretch on the left I find difficult to stay strong because I have to switch my focus as I go from ‘tree’ to this one. I managed to hold it for 30 seconds today with a bit of a wobble! Okay, I doubt I looked as elegant as the pictures above but I look better than the very first time I was shown how to do them!

Not only that but I was doing these stretches on a ‘power plate’ this morning and for me, that is impressive!

2015-08-02 17.44.25 2015-08-02 17.45.21
I guess to some it doesn’t seem much doing these stretches but, for me & many MS’rs (people with multiple sclerosis) balance is a major issue. When I started attending the Pilates classes in February I had hardly any balance & very little co-ordination, this is one of my main reasons I started going to Pilates. Since then my core muscles needed for balance have been getting stronger.  

I’m loving seeing the changes in me physically & mentally! 


My body is getting stronger, slimmer and healthier everyday

My Pilates instructor is away now for 2 weeks, when she comes back I’d love for her to see an improvement in my stamina!

Practice, practice, practice until perfect! This is my promise I make to myself!


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!


That moment when you just have to sit down


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!


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!


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!

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!


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!


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!…


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

Constraints of my MS



Most MS’rs, myself number 1 on the list, just can’t stand the heat of the sun! 


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!


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!


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’ 

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.


Sun kissed

Like mother like daughter on this subject!

I am the first one to tell someone how silly they are for not looking after themselves in the sun!

It doesn’t matter what country you are in to apply sun cream, the sun still burns in the UK!

You don’t even have to be sun-bathing to apply sun cream, the sun still burns when you are doing some gardening!

Remembering to apply water proof sun cream is just as important too, the sun still burns when you are in the sea!

The thing to remember is the sun will burn you no matter what country you are in!

The sun doesn’t even care if you are on holiday or not, if it sees you out even just taking your lunch break outside because ‘the sun has got his hat on’ He won’t take off his hat to greet you, no, he’ll get straight to work with his powerful UV rays and he’ll fry you to a crisp!

I recently read an article about people using the sun to burn pictures onto their body

Actor Vin Diesel from the Fast & Furious films hails this craze as ‘glorious’ on his Twitter account he says “Sunburnt art is a Real Thing, and it’s Glorious”

I for one cannot see how letting the sun do this to your body is glorious when skin cancer is one of the most common cancers in the world!

There are more than 100,000 new cases of non-melanoma skin cancer every year in the UK!

Annually 13,000 people are diagnosed and there are more than 2,000 deaths, and the death rate is rising!

I know this seems very different from my normal blogs about MS, exercise & positivity but it still links with a treatment for relapsing-remitting multiple sclerosis (RRMS) called ‘Natalizumab’ also known as Tysabri.

Natalizumab is also linked with Melanoma although the association is unclear, in my opinion it is better to stay safe & protect yourself against the sun and its UV rays!

The truth about exposing yourself to the sun without protection is that you are actually exposing yourself to radiation! Now you have to admit, the word radiation is scary! So why do people do it? Why do people purposely lie in the sun without the required protection against first or second-degree burns?

That’s what sunburn actually is, did you know that? How do you feel about it now?

Time to start using sun cream?


All that said, I am now naming and shaming myself!

Yes, you read that correctly! The picture above is the sunburn I got over the weekend whilst I was in the garden sewing some late seeds & pottering around doing my best to tidy.

I didn’t even give it a second thought to put sun cream on which is so unlike me!

I know by sharing this picture I will very likely be getting told off by friends and family and I accept it! I deserve the telling off because it was very stupid of me not to put sun cream on! Especially as I take ‘Natalizumab’ or Tysabri, I have a fair complexion & I have a suspicious mole that you can see in the picture.

Unprotected exposure to extreme sunlight and ultraviolet radiation is dangerous, it hurts & it looks ugly when the dead skin starts to ‘peal’

Don’t do it!

Wear the correct factor sun cream, a hat, drink as much water as you u leak out & don’t stay in it for too long at any one time!

Enjoy the time you have, spend it wisely & don’t regret the time you spent in the sun unprotected!

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

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 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’…..