Thank you for being you

The amount of love i have for my friends & family is unmeasurable!
AngieMoo, I just kinda like you alot’

Thank you all for your Christmas & New year wishes, cards & gifts!
I was totally Overwhelmed & astonished at the amount of cards we got & all the gifts under the tree!
I had to turn all my notifications on my phone off from Facebook, Twitter, my blog site, Instagram, Snapchat, email and well basically every notification was turned off because I was getting so many!
I had to have breaks from opening our gifts as I keep getting major sensory overload, Christmas day was no exception!

I loved the whole day, I loved all the notifications & found it really hard to stop them! I loved being with family even if it was only for 45 minutes, they were 45 minutes better than non! And me in a pub as well, on Xmas day! I loved having my Mum & Daddy Paul over from Cyprus,  spending time with both is always so precious! New years eve with my Mummy taking silly selfies was priceless! Playing ye old games, making up new rules & watching DebbieRahRah & Sister Bell build a bridge out of ‘Bananagram’ tiles & ‘Jenga’ blocks was incredible! Those 2 certainly have wild imaginations!

Thank you to all for being part of my life, for inspiring me with your art, your photography, your writing, your love for fitness & generally just making me want to be a better me!

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*Photo taken from a thank you card I received today from Rae Hodgetts*


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I don’t want Alarms to wake me!

Nooooooo! Back to Alarms waking us up tomorrow then! 😠
It’s been a lovely 10 days of DebbieRahRah at home! We both wish it could last longer but keeping Fugly (our bungalow) isn’t free & due to me being unable to work…

She’s such a good un! 

Me however, what little sleep I get & how much I kick and punch her in the night I don’t know how she wakes me! Unless it’s for the gym of course!
I just want to remind people that I don’t punch and kick my wife for fun! In fact I have no control and no memory of it! It doesn’t wake me, I only know when I wake in the morning and she’s slept on the sofa!

No gym for me in the morning, I think in fact my appointment tomorrow is much better! I know, I know, is that possible I hear you cry!?
Yes it is… because I’m off to see a man about some pain relief! Yep, that day is finally here! Time to find out what Mr Pain clinic man can do for my back this time!…

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I am a strong woman

I am a strong woman!
I don’t sit around feeling sorry for myself, nor let people mistreat me.
I don’t reaping to people who dictate to me or try to bring me down. If I fall I will rise up even stronger becasue I am a survivor not a victim.
I am in control of my life and there is nothing I can’t achieve!

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The cold really does hurt!

You know, when people come to my home & make a big fuss about how warm it is it makes me cross! I don’t choose to have high heating bills! I don’t relish the thought of the pain that I get when the cold hits my body! It’s like someone wrapping me in barbed wire!
So please, before you complain about that warmth of Fugly Manor, think!
If I come to visit you in your home over the festive period and I leave my coat, hat, scarf & gloves on, it’s nothing personal. I just can’t afford to let my body get cold!
Fact is, if you come to my home, at times you’ll see me wearing my hat indoors! 9 times out of 10 you’ll see me wearing my scarf!
I have MS and I am constantly in pain. I manage my pain in many different ways, one of them being ‘not getting cold’

*rant over*


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Improved pain scale

Improved pain scale, much better than the one with the faces! I especially like number 9: ‘Mauled by a bear – or ninjas’

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The regular pain scale used by the NHS here in the UK

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I personally prefer the humour to the first one
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My MegaSpecial life

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When your so tired you could fall asleep as soon as you sit down!

Yesterday I called into the vets to collect ‘Princess Olivia’ aka Ollie medication which should have been ready and wasn’t. Humph!

Basically now my hands are weaker (thanks MS) I have been struggling to ‘pop’ the capsules out of the blister pack without splitting the capsule resulting in the contents of the capsule – tiny Tramadol beads flying everywhere!
I’m sure you’ll agree that this isn’t the best when you then have to bend down and pick the hundreds of tiny, and I mean tiny, balls up!

I’m a strong believer in making people aware of a potential flaw in a product and it’s packaging. So I phoned the vets last week asking them if it would be possible to revert back to the brand of medication Ollie had previously as the packaging for these was fine.
It turned out that they weren’t able to do that and when I had explained my troubles they agreed it would be fine for a member of staff to ‘pop’ the capsules out of the blister packs for me.
I left it in their capable hands and at the beginning of this week I had a call advising me that Ollie’s medication was ready for me to collect.

That’s where I was when I took this photo!
Yes her medication was there but it wasn’t ready! The staff I had spoken to about the packaging hadn’t left any notes about my phone call and so the capsules were still in the blister packs.
When I explained to the lady serving me that “I think the back part of the blister pack is made out of led” She tried to ‘pop’ one and guess what happened! Well the capsule didn’t break but it was very squashed.
The lady disappeared, when she returned she said they were more then happy to take the capsules out of the original packaging for me but, next time if I could ask for them to do it before I call in to collect! Really! I HAD just explained it all to her!
She advised they would be a while and invited me to sit down and wait.
When Ollies’s Tramadol was ready a different staff member bought them to me and again asked me if I could advise them to do this before calling in to collect! Oh my days! I had honestly already spoken to 3 different people over the phone about this before collecting! Me thinks the staff members need to learn how to make notes!
*Photo time!*
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I look awful in this photo, (it shows better in the first picture how tired I look) I’m quite proud of myself for sharing it with you!
This is how tired I get after an hour in a Pilates class, a coffee after (tiring because of all the noise and not just from our table) and then a very brief shopping experience for groceries (also extremely tiring, maybe even the most tiring because of the noise and also the amount of people busying around!)

What I didn’t need was to have to wait for Ollie’s medication, like I said at the beginning… I sit down, I wanna sleep!

Some people don’t think I have a busy life because I don’t work, actually I’ll change that… I don’t work because I can’t work!

Some people just don’t realise how it’s a full time job maintaining your own health when you have MS!
This is what I work at! Staying well for myself and my family!

Some people don’t think about all the little things that they can do and without a second thought, actually these little things can be the hardest things for us to do!

How hard it is to get up in the morning, how hard and how exhausting it is to have a shower, how tiring it can be to drive anywhere, how stressful in can be to make sure you are at a Pilates class in time!

I’m very lucky that I have the most wonderful Pilates instructors who are so understanding and compassionate!
It doesn’t take much to have a little compassion!

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Pain medication

Will I ever change!? I went to get my fatigue meds this afternoon like I do everyday and my morning meds were still in the medicine wallet!
Well that explains why I’ve been in extreme pain today then!
I’m happy to report it wasn’t my visit to the gym last night that has made my pain worse but the fact that I didn’t take my nerve meds until 2pm!
What a numpty!
I’m now no longer in as much pain as I was this morning/afternoon! The way I was feeling I really didn’t think I would be ok to go out to the cinema for our friends belated birthday present! That’s where I am now, sitting waiting for the film to start. We’ve come to watch the final part of ‘The Hunger Games’
*I hope I don’t fall asleep, it’s been know to happen!*
ROLL TITLES 😉

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Multiple Sclerosis fact #5, vision problems

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Needle point, one of my favourite things to do!
Threading A needle is fun when there’s TWO of them (thank you double vision)

Sewing a seam is joyous when you need the cloth and the thread to be identical in colour. This means with my MS vision I can’t tell where I have sewn and where I need to sew (thank you loss of contrast)

It’s no wonder I always end up with a pile of items waiting to be repaired!
When something joyful becomes dreadful!

40 minutes later and I’m still trying to thread the needle!

Obviously the danger is this, having a disease that drains my energy so rapidly means that I do tend to fall asleep at the drop of a hat! This always happens if I’m stationary for a long time. If you weren’t aware, sewing requires you to sit on the same place for a certain amount of time. It really wouldn’t take much for me to nod off & poke myself in the eye with the needle!

Thats why we’re MegaSpecial! Because we do really silly things, the great thing is, we train ourselves to laugh at the silly things! It gets us through!


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Sativex

Can I ask a massive favour, please can you sign this petition and share it with others to.
This medication is NOT available in England yet but if it was it would help me and a lot of my friends that have MS!

https://petition.parliament.uk/petitions/111992

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