Category: Constraints of my MS

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

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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!*

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#invisibleillness #iiwk15 #invisiblefight

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I haven’t posted anything on my blog for a while, for those that follow it I am not giving in with it.
I am having a little confidence knock which I believe to be a part of my anxiety/depression & my MS.

It is becoming increasingly harder for me to cope with a lot of technology and so I am trying to have a cut back & a ‘low tech’ time!
This is proof that even us happy, cheery people aren’t always what they seem on the outside!

This is my #invisiblefight to get me back!

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megaspecial.me
megaspecial.co.uk

Rediscovering a MegaSpecial me

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Oh my days! This was my post, this day FOUR years ago! Counting down to the firewalk fundraiser we organised for the MS Trust!
I never thought that night would have such a massive hit! All I wanted to do was prove to myself ‘if I can walk on fire then I can be stronger than MS’

I didn’t realise then what an amazing journey I was about to go on in rediscovering myself!
It’s taken along time but I think I’m finally at a place in my life that seemed so unreachable so many times!

I know there will be difficult times ahead, this is my life & I have MS! I’m in such a better head space now than I ever was before! As long as I stay this way, this focused then I hope I can handle anything thrown my way!

megaspecial.me
megaspecial.co.uk

#MyInvisibleFight #3 Bored of being bored!

#MyInvisibleFight #invisibleillness #invisiblefight #iiwk15

*THIS IS IN NO WAY A ‘PITY PLEA’ AND I’M NOT BEING NEGATIVE, I JUST WANT PEOPLE TO BE AWARE OF HOW HARD IT CAN BE FOR PEOPLE WITH INVISIBLE ILLNESSES*

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After seeing the post on Facebook (shown above) I have decided I shall take part & so every time I see a photo opportunity of #MyInvisibleFight I shall post the picture on instagram & here on my blog site which will then share to Facebook & twitter!

If you know me, are close to me & think this will be too upsetting for you then please stop reading now.

My intention isn’t to upset people, nor is it to make people feel sorry for me or others with Invisible illnesses. We don’t need a ‘Pity party’ we just want people to understand & realise how hard it can be for us! How incredible we are! How strong we have to be!

To be honest, this is quite a good ‘pick me up’ for me as I often forget the challenges I have & still do overcome!

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My 3rd picture is so terribly boring! No no no, not the picture! The picture isn’t boring, it shows boredom!

Everybody at some point experiences boredom but I suspect it’s short lived? What if you experienced boredom everyday.
What if you were looking forward to the weekend, only to find out you when you wake in the morning any plans you had that day would have to be cancelled! That’s right, cancelled!
I didn’t have many plans for today, Saturdays are usually my days off from exercise especially when my partner is off work so that wasn’t a problem for me, what was a problem was my pain levels! Far too high!
It was then that I was asked if I wanted to go clothes shopping! Seriously! But we went shopping last night, I hadn’t anticipated going today as well!
That was it, left home alone! I can’t stop my partner from doing things because I can’t go! I bet it’s as hard for her to go alone as it is for me to say ‘I can’t go’
The fear then is not knowing how long I’ll be cancelling plans for! Is this going to pass soon? Temporary, it’s only temporary? Please let it only be temporary! Oh man, I’m bored already!

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‘Ping’ goes my phone, I reach for my phone & smile! This is when the fashion show begins, yey! I have always love clothes shopping so this was perfect, I didn’t feel as though I was missing out at all!

I’m very lucky in that I have wonderful friends who I get to chat with most days via the wonderful world of technology that we live in today!

That wasn’t the case for me 5 years ago when I was suffering badly from acute Multiple sclerosis relapses. At this point I didn’t have the amazing network of friends that I have now! I didn’t have the knowledge or the understanding of my 2 illnesses (Multiple Sclerosis – MS & Fibromyalgia) as I do now & I certainly didn’t have the ability to say ‘you go, I should really stay here’ What I did have was a lot more days when I had no choice but to stay in bed because I didn’t ‘look after me’ and because I didn’t have all my Internet friends I had a tremendous amount of boredom!

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megaspecial.me
megaspecial.co.uk

#MyInvisibleFight “How do you open yours?”

#MyInvisibleFight #invisibleillness #invisiblefight #iiwk15

*THIS IS IN NO WAY A ‘PITY PLEA’ I JUST WANT PEOPLE TO BE AWARE OF HOW HARD IT CAN BE FOR PEOPLE WITH INVISIBLE ILLNESSES*

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After seeing the post on Facebook (shown above) I have decided I shall take part & so every time I see a photo opportunity of #MyInvisibleFight I shall post the picture on instagram & here on my blog site which will then share to Facebook & twitter!

If you know me, are close to me & think this will be too upsetting for you then stop reading now.

My intention isn’t to upset people, nor is it to make people feel sorry for me or others with Invisible illnesses. We don’t need a ‘Pity party’ we just want people to understand & realise how hard it can be for us! How incredible we are! How strong we have to be!

To be honest, this is quite a good ‘pick me up’ for me as I often forget the challenges I have & still do overcome!

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My 2nd photo is something as simple as opening the post!

I love to receive mail! I no longer get bills in the post, come on people, we’re in the age of technology! Everything is now email, text, apps, this is our world!

“Your EE bill is now ready for you to view online”
“Your E Newsletter is now ready to be viewed online“
“Your now due your next eye examination “

How exciting is it to hear the letter box rattle, knowing that someone somewhere has thought of you! Either that or its a flyer from the local takeaway! No thank you! We don’t want those here!

Off I go to collect my mail, I sit down with whatever hot drink I’m partial to that day, post on the table in front of me & then I remember!

Oh no, my hands aren’t working today! I can’t keep a tight grip of the letter & coordinate my other hand to work at the same time! Oh, oh…. no! I’ve torn it! I hope it’s still readable!

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Yes there is such a thing as ‘letter openers’ I’m just not sure it’s a good thing on days like these for me to be holding something with a pointy end!

Imagine, gawd forbid if I ended up at A&E with a puncture wound somewhere on my body & having to explain to the nurse how I did it! I’m sure they’ve heard worse!
“It was because of the letter & a letter opener, actually nurse, the letter opener is still in my tummy”

Now please don’t stop sending me good old fashioned snail mail because I may not open it to perfection, where there’s a will there’s a way!

megaspecial.me
megaspecial.co.uk

#MyInvisibleFight

#MyInvisibleFight #invisibleillness #invisiblefight #iiwk15

*THIS IS IN NO WAY A ‘PITY PLEA’ AND I’M NOT BEING NEGATIVE, I JUST WANT PEOPLE TO BE AWARE OF HOW HARD IT CAN BE FOR PEOPLE WITH INVISIBLE ILLNESSES*

image

After seeing the post on Facebook (shown above) I have decided I shall take part & so every time I see a photo opportunity of #MyInvisibleFight I shall post the picture on instagram & here on my blog site which will then share to Facebook & twitter!

If you know me, are close to me & think this will be too upsetting for you then stop reading now.

My intention isn’t to upset people, nor is it to make people feel sorry for me or others with Invisible illnesses. We don’t need a ‘Pity party’ we just want people to understand & realise how hard it can be for us! How incredible we are! How strong we have to be!

To be honest, this is quite a good ‘pick me up’ for me as I often forget the challenges I have & still do overcome!

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My first photo is about Pain! We have all felt pain at some point in our lives but most have the pleasure, yes pleasure of that pain being short lived! Have you ever seen pain?
This is the first of #MyInvisibleFight I am never pain free! Some days I ‘cope’ with the pain better than others but that doesn’t mean I’m in less pain! The pain is still the same, it still grinds me down. Like I said, the difference is how I cope with it!

I wake up, I hurt! I need to move, how much will it hurt me to swing my legs out of the bed & sit myself on the edge?
I have to do it, deep breath!
Yeah that hurts! My whole body! Is this what it feels like to have full blown flu? No, it’s worse!

Okay so I’m up & I’m ready
I’m still in as much pain if not more from all of the moving around I’ve been doing but now I’m really focused! It’s time for Pilates! #addict!

It doesn’t end there, when my partner is home from work we then go to the gym for a 30 minute workout!

My pain eases when I exercise! I push myself everyday to do these things because I know that whilst I’m doing them my pain decreases about 10% and afterwards for about 3/4 hours I’m in 50% less pain!

That might not seem much but you tell me when u suffer with chronic pain all day every day if it is worth the push!

The picture below shows it is! Pic to the left was last year…Before pilates, pic to the right was yesterday, 7 months at pilates

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Good bye wobble, hello balanced life

A brilliant article about MS & balance issues!

Makes me realise how well I am doing in pilates & know that what I’m doing in the gym is paying off!

I never thought I’d see the day that I’d loose my balance! After years of working with horses I had incredible balance! It wasn’t until I broke my leg that my balance started to shake & then my MS saw how funny it is to make me wobble when I walk so messed up my balance!

Well, tongue out to u MS cause yesterday I rocked pilates & the power plate!
Today I shall do it all over again just to prove that I am stronger than my MS, for right now anyway!

👅👅👅

http://ms.newlifeoutlook.com/balance-ms/

megaspecial.me
megaspecial.co.uk

Cog Fog made worse by pain

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Having this from my Fibro & my MS! Jeez, double whammy man!

Makes it worse when I’m in pain (which unfortunately is all the time) & when I’m tired!
Being in pain makes me tired, being tired means I can’t handle the pain as well!
That’s where I am today! 😐

Just keep smiling! We’ll get there eventually!  😄

megaspecial.me
megaspecial.co.uk