#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!

image

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

image

image

National Fibromyalgia awareness week

image

Quite extreme & a little negative but I’m sure a lot can relate to this!

megaspecial.me
megaspecial.co.uk

May your Friday sparkle

Happy Friday to all those that ‘Friday signifies the eve of 2 days off with your family’

My plans? A nice gentle back to basics Pilates class at lunch time, DebbieRahRah at ‘Donkey derby’ tomorrow & our girly ‘Olivia’ has hydrotherapy Sunday 🐕

Oh & of course visits to the gym when ever we get chance 💪

Have a great weekend folks! ❤

#friday #sparkle #family #weekend #happy #familytime #pilateslovers #pilates #pilates4ms #thisgirlcan #ishapeme #megaspecialme #bringiton #strongerthanMS #love #lifeisgood #loving #life #followme #MS #positivevibes #largerthanlife #MultipleSclerosisAwareness #multiplesclerosis #inspiration #gym #homeworkout #powerplate #balance #donkeyderby #hydrotherapy #princessolivia

megaspecial.me
megaspecial.co.uk

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

#GOOB

Yesterday was a really busy day for me!

Lots of people chatting with me about the MS news headlines

‘Miraculous Stem cell treatment’

Such brilliant news but I really don’t want people being misguided into thinking its a cure, I’ve attached a link to what the MS Society have to say

Getting the facts behind ‘miraculous’ stem cell treatment headlines

http://www.mssociety.org.uk/ms-research/research-blog/2015/03/getting-facts-behind-miraculous-stem-cell-treatment-headlines


 

 

Believe it or not, that’s not my main reason for writing this blog today!

 

So, I’ll get back to #GOOB

cropped GOOB tag

 

 

My day started as normal as any would. Knowing in my mind what I had planned for the day, I sat down with my breakfast and my iPad and started checking my notifications I had received the night before.

The first notification I saw was from a close friend ‘Toni’ telling me to turn ITV on. Then another message came through from my Dad telling me that the ‘Good Morning Britain’ show on ITV were about to interview a lady that had undergone Stem cell treatment for her MS and I should put the TV on. As soon as I read this the home phone started to ring! It was my friend ‘Toni’ checking I had received the message about turning the TV on.

Click on this link to watch the video clip
Good Morning Britain ‘Holly Drewry’ interview about multiple sclerosis stem cell treatment walk

That’s when my day started to get really busy!

Social media sites started to buzz with the talk of this ‘wonder cure’ Friends were asking me about it, I said the same to them as what i started this blog with….

‘Miraculous Stem cell treatment’

Such brilliant news but I really don’t want people being misguided into thinking its a cure, I’ve attached a link to what the MS Society have to say

Getting the facts behind ‘miraculous’ stem cell treatment headlines

http://www.mssociety.org.uk/ms-research/research-blog/2015/03/getting-facts-behind-miraculous-stem-cell-treatment-headlines


 

 

 

I know I have just repeated the article from the beginning of the blog but I do feel this is a very important message to get across.

Another topic that I was involved with on Facebook was about a photo that had been added to the group ‘Nuneaton memories’ It was an old photo of my families health food and ethnic fashion shop ‘Way Of Life’ before the business was sold in 2000.
I’ve decided after seeing all the lovely comments about ‘Way Of Life’ that I am going to start a new project. I’m going to write about the business from when it started as a market stall in the early 80’s to the very last day! If I can find photos then I shall add those as well.
If my long-term memory ever fails me like my short-term does then I’ll have a forever memory in my new project!

It was whilst chatting about the family shop, the MS news and researching it in more depth that I realised the time! 12:15!
I was going back to a Pilates class after not going to it or any other fitness classes including the Gym for over a week due to sickness! You can imagine how excited I was to be able to go back!

12:15 I was still in my PJ’s, hadn’t had any lunch and hadn’t checked through my gym bag to make sure everything was in there that I needed! You know like the important things!
I got myself some lunch and mistakenly continued with the social media conversations! This is always a big mistake as I do tend to get lost in them!

13:00 the phone rang, it was my partner calling me whilst on her lunch as she does everyday. I explained I wasn’t dressed for Pilates & at the same time I looked at the clock, 1pm! It was 1pm and the only thing I had done in 45 minutes was have lunch! Oh dear! This was the time I should have left to make sure I arrived at the leisure centre to meet my friend and be in time for the Pilates class.

Now for anyone that knows me personally you will know how stressed I get when I have to be anywhere for appointments, it’s all down to the time restrictions. This is also the case for classes, so Pilates, I leave early to allow for any traffic delays, Aqua fit is further away so I leave extra early and usually end up sitting in my car for ages!

So imagine how I was! I always say I’m getting ‘in a flap’ Well, if I was in any more of a flap my feet would have left the floor!
I finished the phone call with my partner and rushed around like I was on fire! I always think that the more you rush the slower you are as you make more mistakes! When I’m in a flap I never think to slow down & remember this!

I got my self ready, sorted the dogs and grabbed my gym bag… oh no! My membership card that I need to enter the gym, wasn’t where it normally is! I hadn’t checked when I first got up!
I emptied all my bags & different purses looking for my card. I couldn’t find it anywhere!

13:25 The Pilates class starts at 13:30! I had 5 minutes to get to the leisure centre which is easily a 10 minute drive without traffic! This was so not me! I’m like Sheldon from ‘The Big Bang Theory’ when it comes to situations like this! How could I get there and to the class in time! Knowing it was impossible I still continued to make my way out of our Bungalow!

13:30 It always happens when you’re in a rush, the refuge bin collectors where on their routes which just happened to be the same direction that I was going! Well, if I had no chance of getting there in time 5 minutes ago then I was most definitely going to be late! I remember thinking, what do I do? This was a whole new experience to me, remember ‘I am Sheldon’ shall I pull over & phone the leisure centre so I don’t get charged for not turning up?
I carried on! Again a new experience, not phoning to tell them about my lateness! What a rebel!

13:40 I finally arrived in the leisure centre car park! 10 minutes late! I’m never late for anything! I felt like crying, I was already feeling sensitive because of going down memory lane earlier on with the comments about our old shop.
My friend’s car was there, she must have gone straight in.
I stood at the ticket machine for the car parking & felt my eyes well up! Something incredible happened next, I started to asses the situation. For the first time I actually changed my thoughts from feeling angry with myself to deciding how I could make better this situation. I was definitely too late for the class, I wouldn’t be joining in with Pilates today, that was for sure. I still had to go in to the centre to explain about being late, I had to apologize at the very least plus I needed a new gym card after losing the original! I may even have to pay for the session (I am a member so the cost of session is all in with my monthly charge. Unless you fail to attend the class without warning)
Decided then, I would go inside! I got my car park ticket and made my way into the centre all the time thinking about Shift.ms

13:45 Yep I really was late, I explained to the lady at reception that I was late and I needed a new card. She offered for me to carry on into the class at which I declined, the class was by now 15  minutes into the session. Me walking in so late would have been very distracting, something I know I wouldn’t appreciate if it happened to me.
The receptionist said I wouldn’t have to pay and she didn’t charge me for a new card either *hush-hush*

 

This is when #GOOB happened!

 

10665539_873725632637971_407634750_a

 

I thanked the lady on reception, what a lovely kind thing to do for me. I then asked her if the card was active? It was, perfect!

I then made my way up the stairs and into the changing room to put my bag in a locker. I then left the changing room, straight past the dance hall where Pilates was and into the gym!
I spent 45 minutes in the gym working on my balance and then made my way back to my car where I sat and waited for my friend to come out.

When I saw ‘Mummy Crispie’ walk towards the car, the look on her face was just brilliant! She was obviously confused about why I was sitting in my car and hadn’t gone into Pilates. I explained everything to her and we sat chatting for at least 20-30 minutes. When I say we ‘sat chatting’, Crispie was in her car with window down & I was in my car with window down of course. This really tickled me and kept me smiling during the journey home.
(Crispie is a nickname for my friend Christine who I have known since I was 4! She is my best friends Mum!)

Crispie seemed really impressed when I told her I went into the gym instead. I felt really proud of myself!

This was definitely my #GOOB! Making Good Out Of Bad!

 

tumblr_inline_n1tqwcFgiO1rdmww5

 

 

 

Thank you Shift.ms for reminding me that it only takes a small change to the way you think to make

good out of a bad moment

holding-image_300x200

jordan-flag

PZN-ZNsr

 

 

 

Here are some visuals from the Shift.ms web page that I really like and help me to stay positive…

Just change the Yoga for Pilates and this is perfect for me!


I have done this but i think I may to look at it again, maybe that way I won’t be late in future!


Shift.ms aims to create a positive, enabling community for MSers which empowers them to acknowledge their MS, rethink how to achieve their ambitions and get on with their lives.

The Exercise Referral Scheme P2

Pingles Leisure Centre ‘Everyone Active’

The Pingles simming and stadium facilities

http://www.everyoneactive.com/Centre/Pingles-Leisure-Centre/121/Home

The day had come for my first meeting with ‘Anneka’ my exercise referral fitness instructor!

It was Wednesday 9th July (I am a little late updating this part of my blog!) I was so nervous! I didn’t know what to expect! So I went to my appointment wearing clothes I thought appropriate for a gym! I had never been to a large one like this before!

I arrived before my appointment time as I always do and went to the reception desk. There always seems to be a cue when you really don’t want there to be one! Because of my issues with my back and legs I can’t stand for longer than a few minutes without being in extreme pain & feeling as though I may pass out! Seems extreme but I am telling it like it is!

Luckily the cue didn’t last to long & my wonderful pink walking stick kept me upright! I advised the person on reception my reason for being there and the reply I had back was so obvious… ‘You need to go to the gym’ Lately I seem to lack the common sense to know that’s where I would be seeing a ‘gym’ instructor! The clue is in the name right!?

I then had to ask for directions! The gentleman kindly pointed at the sign and said ‘its upstairs!

I think if the sign was flashing & in my face I still wouldn’t have seen it!

I made my way up the stairs feeling a little silly, this time I was looking at all the signs & following them correctly!

I was out of breath and my heart was pounding, surely my workout was done for the day just by climbing those stairs! Thank goodness for my walking stick and the rail that went up the stairs!  I live in a bungalow so other than having MS this is my excuse for not handling stairs well!

I walked through the doors into what felt like a cool box! I went straight to the next reception, now I was a little late! My anxiety was right at the top of the chart! I’m not good in these sort of situations and now because I had to wait in a cue in the wrong area I was late! Great!

I explained to the next gentleman my reason for being there and he was lovely! He told me Anneka was still with someone and she would be with me soon, he also asked if I would like a chair while I waited! This of course was a lovely gesture and without a second thought I politely said ‘yes please!’ whilst in the back of my mind thinking Really! Do I look that bad just from climbing the stairs! Wow! Everyone will definitely be staring at me when I start my workout!

The door opened to where Anneka was and out came two young women. I felt like I was about to be charged for some awful crime I hadn’t committed!

One woman walked away whilst the other called my name, I followed her into the tiniest room where she introduced herself as Anneka and invited me to take a seat. This is where I have to control my nervous blurting out and dry sense of humour! Instead of asking where she would like me to take it to, I just sat down!

Whilst I was in the room Anneka explained to me about the exercise referral scheme:  A 12 week course where I see her at the beginning for an induction, halfway through for a ‘checkup’  and then at the end of the course. The rest is up to me!

My physio ‘Emma’ had already explained this to me but I listened intently! She told me the price which includes visiting the gym at anytime and using the swimming pool if I wanted to! £8.50 per month for the 3 months! I was amazed! So cheap! What a great incentive! Of course when I finish the 12 weeks (3 months) the price does go up but I think I get a reduced rate if I decide to continue. This I will have to check up on!

Next she took details of my medication, my weight, measured my waist and I then had to blow in a tube so she could check my ‘peak flow’

Peak expiratory flow

From Wikipedia, the free encyclopedia
Peak expiratory flow
Peak flow meter horiz.jpg

A peak flow meter issued in the UK.

The peak expiratory flow (PEF), also called peak expiratory flow rate (PEFR) is a person’s maximum speed of expiration, as measured with a peak flow meter, a small, hand-held device used to monitor a person’s ability to breathe out air. It measures the airflow through the bronchi and thus the degree of obstruction in the airways.

Anneka imputed the results onto her laptop and then stuck extremely sticky pads to my feet and hands so she could work out my BMI

Body mass index

From Wikipedia, the free encyclopedia

A graph of body mass index as a function of body mass and body height is shown above. The dashed lines represent subdivisions within a major class. For instance the “Underweight” classification is further divided into “severe”, “moderate”, and “mild” subclasses.[1]

The body mass index (BMI), or Quetelet index, is a measure of relative weight based on an individual’s mass and height

The sticky pads also gathered other information for her, she complimented me on my water intake! Yes it even showed that!

She also asked me to take some deep breaths and try to calm down as my heart rate was extremely fast! I explained to her that it could be due to my anxiety & also climbing the stairs. At which point she was very impressed that I used the stairs rather than the lift & I was showing great enthusiasm!

My reply to that: ‘theres a lift!?’ Like I said earlier, I have no common sense to look for signs or in fact a lift when presented with stairs! You would think I would learn but I don’t! In these situations I find it better to be amused by my error than upset or annoyed!

She asked me why I was so anxious, I explained that it is a part of my MS and just the thought of going into a gym terrified me! She said that I wasn’t alone with those thoughts and that most people feel the same which I kinda expected that to be the case but it didn’t help to calm me!

She said that my anxiety was a good thing in a way because it meant my heart is constantly pumping fast but in a bad way because it was doing so for no reason, therefore it is wasted energy.

The best part of my reading was that I have more muscle than fat and I just need to wake them up! She said it is a good thing that I was very active in the past and before my legs got weaker. It means it shouldn’t take much to get reasonably fit again! Yay! Some good news!

I took a picture of the results & I’m not afraid to share them! Thats the thing with me is, if I think by doing this blog & sharing with you the start of my:

20140626_125854_Android (2)

will inspire and give incentive to others then I’ll do it! And here they are:

20140709_153718_Android (3)

Good luck if you know what it all means! I only know the bits that I need to!

Anneka then got out her diary and we planned for our next meeting, the ‘Gym induction’ So i’d worried about going into the ‘gym’ for no reason! I could now leave that until the real day!

….to be continued!

The Exercise Referral Scheme

I have to see a Neurological Physiotherapist about once a month for my Multiple Sclerosis (MS). Her name is ‘Emma’ and she is fantastic!

What is Neurophysiotherapy

We have been working on the best way to increase my energy levels because i have Chronic MS Fatigue

What is Chronic Fatigue? (MS Fatigue)

MS Fatigue is one of my many symptoms and probably one of the worst.

It can be very frustrating as many people don’t understand it because the word ‘fatigue’ is used and felt in everyday life.

http://en.wikipedia.org/wiki/Fatigue_(medical)

‘General Fatigue’ should not be confused with ‘MS Fatigue’

MS Fatigue:

Much like someone who has just hiked 20 miles up a steep hill after two days of no sleep while carrying a backpack loaded with rocks on the hottest day of the year…that is fatigue. It’s that moment when your legs can no longer hold you up and every muscles, bone, and even eyelid hurts. Then as soon as you sit down (or more like fall down) you are asleep. A tornado could blow by and you would sleep right through it.
It sounds odd but one of the best ways to gain energy is via exercise!
And so the last time I saw Emma she told me that she could do a ‘referral for exercise’
This is an exercise scheme at a local gym. A 12 week course where you see an instructor at the beginning for an induction, half way through for a ‘checkup’  and then at the end of the course.
It is at a reduced cost which I think is fantastic! This means more incentive!

I was up for it! I’m very keen on getting my fitness back to how I was pre MS or at least try to!

So the form was completed by my excellent nerophysio and I waited for a phone call!

We named it

20140626_125854_Android (2)Written for me by my Neurophysio! So I wouldn’t forget!

This was my aim!