You just need to get out more……..

 

Before I start I would like to explain that I have always been a fiercely independent woman. Some call this being a stubborn old goat and actually I think they could be  right as I still am :-).

Frequently people say to me you just need to get out more and everything will be fine! This is one of the most frustrating sentences ever!  Been diagnosed with Multiple Sclerosis is hard enough without people thinking they know what’s best for you, when they don’t actually spend the time to find out how this condition affects you personally!! They call Multiple Sclerosis a snowflake disease because there are over 50 symptoms of varying severity and no two sufferers are the same!

Generally I’ve pretty much got the hang of adapting and managing everything day today to do with my symptoms and surroundings. There is no such thing as spontaneity anymore, everything has to be planned in advance and I have to be aware of my exhaustion levels before we even think about starting an adventure even a simple trip to the opticians for example.

If my crystal ball had been fully functioning when I was looking at properties I would never have chosen to live where I live now! Obviously you don’t know what’s around the corner so you can’t completely plan for those unexpected life changes! The property that I now live in, is an old converted Victorian house, which is lovely as it has high ceilings and big rooms but to get into that property, I have to climb and old metal fire escape staircase. Parking is on street and first come first served, most people in our road has their own drives but the main problem with parking is the garage opposite us put their over spill out onto the road! This would be fine if I was able to walk the type of distance I need to somewhere I am able to park my car! “Get a disabled bay” people say to me (that is like buying rocking horse poop, not as simple as you think)!!!!!

So, a simple trip to the opticians! Today I was very excited about being out and about, being independent and taking myself to my appointment! This had taken some planning, I have been in touch with the opticians to explain about my MS and find out how close they were to where I would be parking. Unfortunately I have damaged my shoulder so I’m unable to lift and assemble my scooter from my boot. I had calculated that at a push I could manage to walk to this appointment from the car park. I knew that it would be a struggle and this would be all I would manage today. The post office is almost on top of the carpark so I had worked out that after my appointment I might just about be able to visit the post office before reaching my car to return home.

There is always a risk driving away from my flat to go anywhere as I know that on my return there will not be any spaces close enough for me to park! On several occasions I have had to spend two hours driving around awaiting a space close enough to my property (this is always a dangerous thing as part of my MS experience is needing the loo in a hurry), when I finally park I’m exhausted beyond belief  and  just need to be home and resting, but I still have to tackle my staircase before that can happen!

Leaving the car park in town today, I made my way slowly to the opticians only to discover it was a hell of a lot further than I had been told! Walking for me is a real struggle I have the experience of being on a ship without having sea legs, I cannot work out the levels of the ground so have no idea where my feet are going, I use a walking stick to help with the unbalance sensation  but the sensory overload I experience, from not only other moving objects /people and vehicles around me but my brain trying to process information through nerves which are damaged at the speed my body requires it, leaves me exhausted extremely quickly (thankfully I don’t experience this when sitting)!!  Being a stubborn old goat, I struggled and persevered but  I got there only to find all their systems are down and they are unable to see any appointments today! I am aware this is an unforeseen problem and cannot be helped, for me and all the effort I put in to get there it was a hell of a big deal! I then had to sit for half an hour to try and recover enough to be able to make my way back to my car! Once I had arrived I needed to sit again for another half an hour, to wait for the vision in my right eye to settle enough, for me to drive home!

Optic neuritis  sadly has left me with problems in the affected eye and when I partake in any thing physical the vision in my right eye deteriorates rapidly, it recovers again but it takes about 20 minutes!

I know there were circumstances out of my control today and the frustrations of not been able to use my scooter doesn’t help but there is still a lot of reasons why it is really hard for me to leave my flat and to go out and do things like I used to! It’s been really hard adjusting to this new life from being such an independent person who was continually out, to now being somebody who is continually in because of the planning, struggles and restrictions of going out into the outside world.

I made it home , without getting to the post office, to play the no parking space game for another half hour then had to sit on the staircase for awhile before attempting to climb it! This is the reason I have shoulder damage as I have to pull myself up the get to the top!!

It’s okay because I’ve booked myself in for a lottery win this week then I can buy myself a bungalow with amenities that are close by and all will be good 🙂 🙂 🙂

Thank you for listening, just wanted to share some of the frustrations of what used to be an easy everyday activity and raise some awareness  of a condition with invisible symptoms and the daily struggles that for the sufferer are very real!!

Hope you have a good day!! 🙂 🙂

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Approaching 50!

It’s only a matter of days now, until I reach the big FIVE ZERO!!!

People ask me, “how do you feel about reaching 50”!?

It’s funny, how time and experiences, change your perspective and feelings about life!

When you’re 21, your whole life is stretching out ahead of you, you don’t think about how much time you’ve got left, what could happened to you, family or friends! At this point everyone seems immortal!!

When I was approaching 30, I was asked, “how do you feel about becoming 30”? For me, it wasn’t  much of a big deal!!  I was still enjoying life, there was  so much going on, my daughter was growing up, I had plenty of things occupying my life and I didn’t stop to think about what could be ahead!

When I was approaching 40, I was asked, ‘how do you feel about becoming 40’? Again it wasn’t a big deal, I always said; turning 50 will be the big one that scares/ worries me!  At this point in life, you start noticing how fast time passes and how quickly your life is disappearing!

Well here I am, fast approaching 50!

How do I feel about becoming 50?

 I’m fully aware, that time is flying past me!! My daughter is now in her mid 20’s, both my parents are no longer here, I have many grey hairs and am now a member of the WI (which is awesome), but strangely all I can think about is…….. I’m alive!!! I’ve made it to half a century!!!!! and that’s fantastic!!!!

I actually feel privileged to have reached this age, I have seen many people not make it to their 20s 30s or 40s!!

The last 18 months of my life has seen some drastic changes.  With my diagnosis of Multiple Sclerosis, nothing is as it was and  will never be again! I truly believe that, although my daily life is a struggle, I have had plenty of time to reflect on life and realise that its far from over!! Everyday is a new adventure and waking up each morning, to live/experience it, good or bad is something to embrace!

So………bring on 50 and lets live it the fullest I can!!!

 

 

 

 

Beach Therapy

In the past, a visit to the beach was considered to have great benefits  to health and Doctors would prescribe it! I really think they had something there!!

There is nothing better than a visit to the beach to provide a sense of calm, relaxation and blow away the cobwebs in your mind!

I love to feel the sun on my skin, it gives me an almost automatic energy boost and fills my body with a sense of renewal! I don’t necessarily mean the sun at a super hot temperature just warm enough to feel it through my clothes and banish the winter blues!

However, where the beach is concerned, I love to visit all year round! The wet, cold and almost bleak feeling from standing on a deserted beach in the middle of winter is very exhilarating! Once you are home, warm and dry again it leaves you feeling tingly, yet weirdly accomplished!!

Our visit to the beach at the weekend was quite early, the best time in my opinion as its quiet. Well there was a lack of humans is what I really mean!!!

The tumble of the waves against the shore, the sound of the birds, the squeak of our dog wanting the ball thrown again and the crunching of the beach as she runs are the actual reality of these wonderful beach sounds!!

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I love just to sit and listen to the sound of the waves (whether they are gentle or fierce!! ), watch the sunlight dance like diamonds on the water and breath in the smell of the ocean!!

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The sea mist took a little while to clear but watching it roll away, to expose the distance edges of the bay, was like observing an enchanted spell clearing and the world awakening!

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Overall the best natural therapy ever!!  I highly recommend it!!

50 Things……..

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50 things……..

As my “BIG O” approaches with extreme speed I am being asked what am I going to do? Am I going somewhere flash or lining up an extravagant gift of jewellery??

To be honest I am already escaping to my little spot of paradise later in the year and extravagant gifts don’t really appeal to me!

so…..I wound up the dusty cogs in my brain and had a think about what I could do, that would last the whole year and without the need of a huge cash out lay!!

I have decided to compile a list of 50 things, that I would like to do and spread them throughout the year, starting from my birthday in May!!

This have given me time to reflect on my life so far. It has most definitely been one of experiences and not always good but I have had some very exciting and memorable ones too! Obviously the birth of my daughter, her growing years were something I would not have missed for the world and she has grown into a wonderfully strong young lady,that I am very proud of!

Some of my other memorable moments have been in the form of: flying lessons, skid pad training, rally experience day, army assault courses raising money for charity, a drive of Lotus Elise, Driving the Ridgeway in a landrover plus a ride in my all time favourite car, an AC Cobra!! A bit of a petrol head really 🙂

Compared to these things my list looks somewhat tame but they are things I am excited to experience!! I am really looking forward to planning out the year, having photographic evidence to make a huge collage for my wall! I can then reflect on the fun, when times with my MS are not so good!

Example of list items:

  • Find a crop circle
  • Ride a Tandom Bicycle
  • Teach myself to Juggle
  • Fly a Kite
  • Have my nose pierced
  • Drive a Steam Train
  • Visit the National History Museum
  • Make a time capsule
  • Have an abseiling lesson
  • Have a picnic watching a local cricket match
  • Visit 5 National Trust Properties in one week!
  • Go Kayaking
  • Play Pitch and Putt somewhere random

As you can see there is nothing earth shattering but lots of little things I keep saying I am going to do and this way hopefully I will have a fun year!!

I promise to keep you posted as I go along 🙂

Have a good week!!

Lou 🙂 xxx

Inspirational!

Star Muddy

 

Inspirational…… a person or thing that motivates!

There are so many people that I would call inspirational, here are a few on my list:

  • Amelia Earhart – an American aviation pioneer, author and first female aviator to fly solo across the Atlantic Ocean!  – Always wanted to grow up and be just like her!
  • Nick Vujicic – A motivational speaker born with Phocomelia, a rare disorder characterised by the absence of all four limbs!  – Totally amazing man, love listening to him and proves you can do whatever you want regardless of what life throws at you!!
  • Sir Edmund Hillary – a New Zealand mountaineer, explorer and philanthropist. Hillary and Nepalese Sherpa mountaineer Tenzing Norgay, became the first climbers to reach the summit of mount Everest! – How can you imagine, the strength and determination it took to achieve this??!!!

Recently, more people are referring to me as inspirational! I feel:  shocked, emotional but also proud that they say this!!??  I  however, don’t see myself this way!!!   I, as so many others, am just trying to keep my head above water and fight my illness as hard as I can, to achieve the best possible quality of life ! But!!!  I think I maybe succeeding in my fight, for them to notice and  make this comment!!!

I have always been stubborn and I believe, this is the quality that keeps pushing me forward. If my battles and successes, give others the motivation to keep stepping forward, then that makes me one happy warrior!!

I am learning that inspirational doesn’t necessarily  mean big, it just means that someone or something, gives you extra momentum and sometimes turns on a light, for you to follow! I have also been given this recently!

As my life is changing and I am having to adapt to the new one, I am seeing and experiencing things very differently  but I never forget who I am or who I was before!!!

I have loved photography, even from the early age of 6. My dad gave me a camera, we went out taking pictures and then spent hours developing them. I am no expert but it’s something I have always had a passion for! Recently, I have allowed that to get buried with all the diagnosis chaos!!

One of the wonderful things about the internet and blogging in particular, is reading other blogs! One had caught my eye and given me, some inspirational momentum to get back to something I love – black and white photography! I had been reading this particular blog and loved the black and white pics that are posted, I find them more dramatic than the colour and they make my imagination work harder!!

So……. I picked up my camera, headed out into the big wide world!

Below are some of the results!!!  I hope you enjoy looking at them as much as I did taking them?

My crazy but wonderful dog!

Sepia Daffodils  and a tranquil, sparkly sea!!

 

Hope you all have a good week, keep that momentum going !! 🙂

I will be back soon!!

Lou

xx

 

 

 

Burn’s Night!!

As a child, I have always had an affinity with Scotland! This came about from our many family camping trips! For years, I wanted to go back as an adult and experience all the wonderful things I had discovered as a child!  Last year I got the chance to do that!

It was, however, a whistle stop tour, incorporating: Glencoe (Photography by Lou),FB_IMG_1440436174080

Eilean Donan Castle,

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Urquhart Castle,

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Isle of Skye, Loch Ness, Cruachan power station (Loch Awe),Loch Lomand and Belvenie whiskey distillery to name a few! Amazing and so totally breathtaking, the Scottish scenery is hard to beat that’s for sure and of course, it goes without saying, whiskey is one of the best tastes on this planet!

Although my other half did all the driving, you can imagine how exhausted I was after we’d accomplished this, it took me weeks to recover but I have to say it was so totally worth it! Would love to go again but spend more than a week, then we can stop and enjoy more of it!

On one of our many visits to Scotland as a child, I experienced, haggis tasting!! I absolutely loved it and still do!!!  In my late teens early 20s my first husband and I, would attend Burns night’s, in our local pub. I haven’t been to one of these for quite some time but had really wanted too! Thanks to the wonder of social media, I spotted one advertised in the next village. Probably against all rational thinking (because of my fatigue! but to be fair I had planned my day, with minimal energy dispersement, just to be uprooted by the roofers visit!!! They were, therefore in and out of the flat, in the loft and hammering at something on the roof for many hours without conclusion (so we still have water coming through the bedroom ceiling)  and I sadly missed my midday sleep spot!!!) I should of stayed home but we attended and it was just as awesome as I remembered it!

Today, however, I am totally useless!! Thank goodness I can still talk or this blog would not be written today! I have to say, that this is all I will be doing, apart for resting and again for quite a few days after I would imagine! Sadly this is how life is for me with MS and because I am a stubborn old goat, I know I’m going to suffer but I cannot let what I enjoy pass me by and life is not going to beat me (even if its now thrown me to the floor for a few days I will not let it ruin my life!!) Life is too damn short!!!!

Anyway I digress!! Let’s get back to the Burns Night, what a fantastic night! To be greeted by a Scotsman in his full regalia playing  Bagpipes, sent shivers down my spine! There is nothing more I love than the sound of Bagpipes! Very enchanting!  Once inside the pub and seated at our tables I was able (with help from the other half) to peruse the menus. Three choices of starter, main and desert all looking absolutely gorgeous!!  I had the chicken and leak soup as my starter, of course I had to have haggis for the main and finished with some mouthwatering shortbread, raspberries and clotted cream for pudding (theres goes sticking to my intolerance diet for a night)!

I was a child again, my excitement of listening to the Robert Burns poem, watching the haggis being piped in (and again listen to the bagpipes) was huge!! We of course, had a wee dram of whiskey to toast the haggis before the eating commenced! There were several poems recited throughout the evening and I can truly  say, that everyone that attended had a great time and what an “applause”  at the end!!! Outstanding!!

So within five months I have managed to achieve two things I have wanted to do for many years! Both Scotland related and that makes me a very happy bunny!!

So until the next time, here are my:

Positive thoughts for today:

  • My roof will get fixed
  • Although I’m exhausted today, it means I get the day listening to the adventures of Harry Bosch on Audible woo hoo!!
  • I can and will, have great cuddles with my dog!
  • Skype with my nephew (who is only 4 years younger than me)! More talking Ha Ha!!
  • At the end of the day my other half will come home from work,  we can catch up on the day (and of course have cuddles :))
  • Remember….. Life is a Sandwich!  Everyday is a new day, with  different fillings! Whatever they may turn out to be…….enjoy every second!!

Lou  xx

Howdy Dooderly do…..anybody want a waffle???

It is amazing isn’t it, how I can remember so many words from episodes of the Red Dwarf and Black Adder TV series but can’t remember what I had decided to start blogging today!!! I am tempted to hold MS totally responsible for this but age, also, definitely has something to do with it!!??  It seems many of my friends and family suffer with the same problem too, that definately  makes me feel better! 😊

I truly believe that our minds are like filing cabinets and once it’s full, our memories overspill onto the floor, get forgotten and you have to have a good dig around to find them again! Some, it seems, even  get lost forever (I think a cleaner may have picked them up and put them in the trash!!?? 🙂 🙂 HA HA!! Well thats my excuse and I’m sticking to it!!).

Anyway, I digress, I’m still not sure what I was going to write today, so I will go with whatever come to mind first! brace yourself, here goes……….

I must first, issue a warning here, (and I’m sure you will notice) I will, at times, tangent type!!!! I seem to have inherited this from my mum (god rest her)!   We used to get, well and truly,  into the throws of an in depth discussion, she would, without warning, swerve completely into another conversation! This takes some keeping up with I can tell you!! In fact it leaves you wondering if you had in fact, blanked out for a while and awoke in a different conversation altogether! You would then notice the little twinkle in her eye! She was a cheeky lil devil at times! So apologies in advance because I do have a tendency to do this while typing!!! 😀

 

I “finally” think my energy levels are returning to my new normal, which is “awesome” and my long suffering other half is relieve!  Not only had I been housebound again, I had turned into a stir crazy, menopausal, extremely fatigued, grouchy bitch (Bless him!! )!  No wonder he is going so grey!!

I think at this point I should start giving everyone names for use in this Blog!  That’s going to be kinda fun “chuckle chuckle”,  I will start with naming my other half Ferdinando! (see tangent typing already!!)

So ….

As things are improving, I met with a friend recently for a cuppa and a total bitch about MS and all its lovely symptoms! It seems we are on the same wave length in needing to find something, which is out of the house to occupy our  minds (we can both talk for England and this definitely needs an outlet!!).  For me, finding that my employer was unable to facilitate me currently in employment,  because of my “MS”, has left me with a large void to fill! I know that my energy levels need to be managed daily, hourly if I’m totally honest and it is hard to commit to many things anymore because of this

So even though……

I  have the dog at home to keep me company (which is totally awesome and she is such a poppet ), when I’m with good energy levels I am generally able to take her out in the car, to the nearest football pitch, throw the ball continuously  until she is suitably tired. This at this gets me out in the air!

and…..

I have also undertaken a Baking Challenge, (being intolerant to sooooo many things, wheat/Gluten and dairy being two of them, I have taken this challenge without using either!). So far so good! (You can follow my progress, if you wish, on my Facebook page “Snowflake Baker”?)  However,  just to give you an idea, here is my first attempt of icing and flower making…….

 

 

I am extremely excited about how this turned out as it’s no mean feat for me to achieve, thats for sure!  MS has a nasty habit of making things that were second nature, hard to master these days!

Just a couple of examples: trying to get to your brain to register the correct ingredients/ quantities and making sure its not lied to you (you are holding beetroot instead of the dairy free marg ,which weirdly, has somehow made its way, from the fridge, to your hands) or trying to get your poor vision, to focus on your numb fingers , to roll the icing flowers! This all causes, quite an amount of swearing I can tell you! 😀😀

And obviously ……

I have started this Blog too but all these things are house based!! We have decided to look for some crafty groupy as these will get us out, give us a good old chin wag, while creating something! It also means if we not up to going every week, because of fatigue levels, we are not spending a fortune on course costs!  Hopefully, whatever we find, will be during the day, as evenings are a no go!  We are both useless by then as the fatigue has completely got hold of us!!

I also have the disadvantage of dodgy close up vision (which is a left over symptom of optic neuritis), any small intricate stuff will be virtually impossible, after several mins of straining to see, I will get a blinding headache (which will then last for many days)!  Typing this Blog has the same effect so I use a speech to text system ( to write my words) and a text to speech one  to listen to the written words! I Would be totally lost without these!!

So will keep you posted as to which exciting little adventure we undertake!!

Some words to live by (these are the word that generally keep me out of trouble, obviously they don’t always work HA! HA! but they definitely help me to, manage my worse symptom – fatigue!)………

  • What is my energy level like today?
  • What can I realistically hope to achieve today?
  • Where can I build a rest and relaxation into my day?
  • What pleasurable thing can I do today?

Sticking by these four sentences, make so much difference to my life, in fact I wish I had use these when I was still well and working, I honestly think I would’ve been much less stressed!

Well, I think that’s it for now, not bad as I had no idea where to start! Have a great week!! I will be back again soon.

Take care

Lou AKA Talkie the Toaster!!!

xx