A Summers Day

It's been a while since I logged in here to write. For this, I am truly sorry, not just because it means that you lovely lot don't get to read anything from me, but because my "therapy" of writing to get things out of my head has been non-existent since the mid/end of April. So, here goes...

In the last few months, I have been attending a physio for my leg, which has become progressively more painful and tight. The exercises given were to try and stretch the hip flexors, but alas, unfortunately, as of yet, there has been no improvement and I have been told that I am meeting a new physio next time to try and specialise the exercises and treatment. On the same day as I managed to get this sorted, I also saw my hip specialist, who recommended that the next time I have botox in my hand, I should have some in around 4 muscles in my hip, including flexors, in order to make exercises easier. Although this was a major breakthrough, due to the fact I now have acknowledgement of pain in my hip after 7 months of pleading with anyone who will listen to do something for me, I am also extremely nervous, as I do not have anesthetic whilst having botox.

Onto my hand, and I'm now onto my second lot of botox in many different muscles in my hand. Whilst it seemed to work the first time, I have noticed a lot of weakness and less control in my hand this time. I am now unable to hold on to anything at all, which makes it extremely awkward whilst walking with my stick in my good hand. I'm hoping that this will improve with time.

Work has  been busy but productive. I have now learned more about coding behind Access systems, and, although its only very basic, and most of it still goes over my head, I am able to understand how much effort it takes in order to make the system into the needs of the business that I work for.

On top of work, I have put myself forward to be a mentor for the charity that I hold dear to my heart, Hemihelp. Brilliantly, my application was accepted, and I am attending a training day for this down in London next month. I am very excited for this, not only for the prospect of the future of mentoring, but because this training gives me the opportunity to meet people I have been speaking to for a very long time and now regard as close friends.

So... First blog in a while, which means that it might not write as well as it should, I've fallen out of habit. Hopefully, now that I have untangled my brain a bit, I can get back in to the habit of writing. Hopefully, onwards and upwards, my friends..

Love to you all xx

The Beginnings of Paolo Di Canio

When Martin O'Neill was sacked by the board three weeks ago from Sunderland AFC, the majority of fans and all media were outraged. After a 0-1 defeat against the league leaders, Manchester United, no one would admit to themselves or others that it was justified despite the fact we hadn't won a game since 19th January against Wigan away.

The outrage of the sacking was added to, when Sunderland announced that Paolo Di Canio, previously the manager for League Two Swindon, would be the man appointed as head coach.

The media immediately swooped down on Di Canio, broadcasting his "political views" and generally trying to make a mockery of Ellis Shorts decision to appoint him, which led to many fans stating that they wouldn't go to another game under a facist, and the Miners Association demanding that a sign held in the ground be returned.

Di Canio fought back, stating that his political views had nothing to do with football, and that he was to concentrate on the job in hand i.e. to try and prevent us from the drop into the championship, and to play some football.

Five days later, fans travelled to Chelsea for Di Canio's first game in charge, and gave him a respectful welcome, despite his purple jumper.His passion was immediately evident, but, unfortunatey, you can't just win on passion, you need goals.

The final result was 2-1 to chelsea, but by God did the players work hard, and the 2 goals preventing us from any points were unfortunate. The fans who travelled were more optimistic, and had a glint of hope that the impossibility of staying in the premier league, could indeed happen under Paolo Di Canio. All Sunderland needed to do was pick up points.

Easier said than done. Cue the next game, none other than the Tyne/Wear derby... a game at St James' Park that Sunderland hadn't won since the year 2000. What hope did Di Canio have of getting the fans and media onside with such a game??

Well, it turned out, he had a lot of hope (and of course passion)!

After a great performance, some great saves from Mignolet, and 3 show stopping goals by Sessegnon, Johnson and Vaughan, the mighty Sunderland defeated the Magpies by 3 goals to nil. Confidence was booming, most fans turned themselves toward supporting Di Canio, and by beating Newcastle, he became an instant legend.

Source: Google Images

Although the derby was a sweet feeling, we still needed results from games to come in order to avoid the drop, and the next game to come was against Everton, our "bogey" team. The last time Sunderland had won against this team, which has progressively improved over the years, was 2001. It was a write-off game. A game where all we wanted to see was a game of football and an attitude of not laying down and taking the defeat.

Source: Google Images

Today, a full house at Sunderland attended to officially welcome Di Canio to the club, not expecting anything but the managers passion. There was plenty of passion, from both the manager and the players, and, despite some sticky situations, we managed to hold on to a fantastic 1-0 win, which gives us a total of 6 "extra points" that we didn't expect.

Before, during and after the game, the atmosphere was electric. Once the final whistle blew, thousands of people stayed in the stadium to sing the new managers name and show their appreciation. I guess this means that he is now accepted by most, if not all fans.

Obviously, I know that the honeymoon period will end. Sunderland will lose a game, and the fans will experience a lot of frustration... it's what Sunderland does. However, the last 3 games, 2 of which are so notorious of awful records, has given me a lot of confidence that passion and belief will play a big part in the future, and hopefully we will progress as a club.

Good Luck Paolo Di Canio

Today: Sunderland vs Everton, taken by me in the North West Corner

Bucket List

After thinking about life in full, and all the things I want to do before I'm 30, I thought it would be a good idea to write them all down in a bucket list type format. This is not a promise that I will do everything on the list, but it will be interesting to look back in 7 years time, and see what I have achieved and what I wanted to do, and to see if anything has changed.

1) Go to Australia - this is a really easy one for me. My fiancés brother lives in Melbourne and we have said that we will go out there, but it deserves to be on the list of things I want to do.

2) Learn the cello - before my hand got really tight when I was 12/13 years old, I started to learn to play the cello, and I really enjoyed it. The downsides were heaving the cello home and the price of the teacher. My best friend has said that she will teach me, and I can do so with a car and a house to put it in, so I'd love to be able to play the cello and read music by the time I'm 30.

3) Go to a PDC darts match - might not sound much, but I've loved watching the darts on tele, and would be ecstatic if I went to see it in person.

4) Meet some very important people in person - Ok, so I'm hoping this will happen way sooner than by the time I'm 30, but it deserves a place on this list. In the last few years, I have been part of the Hemihelp Facebook group, and have been a member of hemihelp for many many years. During this time, I have met some amazing people, and I have been promising myself (and them) that I will meet them.

5) Bit of a deep one, and nothing physical... Stop letting pride get the better of me - so this one may effect number 2 on the list. My hand has began deteriorating with age along with the rest of my left hand side. I have been trying to ignore it, and getting on with things, but unfortunately sometimes that just isn't possible. Number 5 on this list is to try to train myself into asking for help if I can't do stuff.

So the above 5 at the moment are the only ones I can think of. Ok will keep adding to the list, and I would love for people to suggest anything I could add and realistically achieve.

Love to you all xx

Something for the Wrinkles

Years ago, when I was still at school, and just when I started working, I started getting botox in my arm and leg to reduce the tone in my limbs. This stopped, one of the reasons being that my fingers started to freeze, and they ran out of hope that it was ever going to work.

Since this time, I was diagnosed with hip dysplasia, which required 2 pretty big operations to (sort of) fix my hip, and so my hand went unnoticed, pushed to one side. In the last 12 months, I have come to learn that my limbs do not appreciate being ignored, and will make it difficult for me good so. In this instance, my fingers curl in, my hand seizes, and my arm will just bang into anything going and come out in big bruises, for 5 minutes attention.

Last October time, I felt that as my hip had calmed down ever so slightly, I could give my hand a little bit more attention and try to improve function. This has lead me on a journey that, with physio and baclofen included, has seen me today 2 days post botox (with no sedation) feeling as weak as water, and as if I have gone in a big circle. Here's hoping that I can build my muscles up and it can be a second chance success!

I will let you all know how I get on :-) xx

Time to Relax

These past few weeks have been very busy and between work and health, I've hardly had time to breathe. This has left me feeling very uptight and wound up, so I thought if I wrote it all down it might help.

As many of you may know, I work 4 days, or 30 hours, a week in a training provider, creating reports, analysing data and looking after the upkeep of a couple of the systems. Although it sounds pretty fancy, its all pretty basic stuff, and I enjoy what I do. At the beginning of February, there was an office move, and we were moved downstairs to an office at the very end of a corridor. To start with, this was fine, but in the last week or so, I have had to be upstairs and down that many times that I'm exhausted. There is a lift, which I can use and do, but getting to and from it is about 50 metres, and my legs just don't seem to want to do what they're told to get me there.

Also, there is going to be a bit of a restructure, which, although my job is as safe as I ever could predict in this climate, has left me slightly worried that either I'll be given too much work, or that someone else will take over some of the job roles which I enjoy the most. We'll see what happens.

Over to health, and the only word I could use to describe how it feels is "deteriorating".

I went to see the physio for my hand, which ended in me being told to continue with exercises, but that there isn't anything else she can do until I have had botox and to give me a call once I've had an appointment. My first appointment at a clinic for tone/botox is at the end of this month, but the odds are that I'll be popped onto another waiting list for another few months before I get it in my hand, and without a physio stretching it every week, my hand has the tendency to tighten back up, which is worrying.

A few months ago, after quite a bit of discomfort in my leg, I saw my hip specialist, which I have written about in a previous blog. In this appointment, I was told that I had to just deal with the inevitable discomfort and that he didn't need to see me for another year. Since then, no one has looked at my leg, and without a referral, the physio for my hand wasn't allowed to even take a look. I have a lot of pain in my leg, and I suspect my muscles are tight.

So... My game plan to get sorted...

After I posted a photo of my foot on a forum, I have been told, and intend to, seek medical advise and ask to be referred to either my old orthopaedic surgeon, who deals with both paediatrics and adults, or at least to someone who understands that hemiplegia comes as a whole, and that I will always need assistance. Just fixing one part of my body will not mean I am perfectly fine and need to see no one else.

Finally, I'd just like to thank everyone who has answered my questions, supported me and even read this post as I moan about certain things. You give me the strength to not give up, which has entered my mind more than a few times. My gorgeous fiancé also deserves a mention, as he has been my rock and pushed me to do everything I can, even when I don't want to.

Thanks to all xxx

Engagement, love and struggles in life

On the 11th February 2013, my gorgeous boyfriend of just over 2 years happily asked me to marry him, and I accepted in complete shock, awe, amazement and excitement, I accepted his proposal. I now wear a beautiful white gold diamond ring on the third finger of my left hand (despite my disability and spasticity) and have never been happier.

3 days later, it was valentines day, and despite a lot of people asking, I requested that the only we gave and receive was a cheap card factory card of 99p. Call me old fashioned, boring, grumpy, anything, but it doesn't take one day to tell your other half how much you love them. If you truly have found love, you tell them and more importantly show them every day you have together, because life is too short to wait for 14th of February.

So far, there are no plans for us to get married right away, there is no rush, but I would like to think that in the next few years we tied the knot and become mr and mrs. I guess that's all wait and sees.

In other news, I have finally been given Baclofen in a tablet form, and have found out that I am able to take codeine with it. I am thankful for this information, as recently I have done too much and so am unable to cope with the pain and tightness of my limbs. I struggle daily to get up some stairs, and even more recently even driving my car. Thankfully, my lovely fiancé has doted on me hand and for recently, helping me up and down the stairs, cooking the tea etc.

So all in all, even though I'm struggling at the moment mobility wise and health wise, I am happy in love at the moment.

Keep smiling people xx

Working Life With Hemi

In the last few weeks, I have found that I have reduced stamina when I'm going to work 4 days a week. Because of this, I thought I would go back to the beginning, back to where I first got a job 5 years ago.

August - September 2008

Imagine any normal 18 year old, just finishing their A Levels and going into 6th Form to get their results, so they know if they got into uni or not. This was me. The only difference being that I had other plans... and it didnt involve going to uni.

For the last few months, I had been going to my mums work voluntarily to stop me getting bored. I had applied for hundreds of jobs and had no luck, so had given up hope, and to get out the house, worked for nothing at East Durham College doing general administration work. I loved it.

The week before my results for my A levels, I had a phone call from my mothers boss, telling me that a lady at one of the other sites had gone on long term sick, and they needed quick and convenient cover to sit on the reception, and she thought I would be perfect for it. As an 18 year old, all i thought at that point was "MONEY!!!" so I applied for the job, and a week later, I was in an East Durham College uniform, sitting in the reception for the first time with a girl that had just spent the weekend i n Magaluf for a hen weekend and so was severely hung over.

As the month passed, I proved myself, and was offered another temporary job, so I withdrew my uni acceptance, and got into the world of work.

October 2008 - March 2009

In the few months of temporary work, I had to go on the sick for 2 weeks, due to having severe pain in my hip. At this point, the doctor only suspected bursitis, so it was a case of grin and bear it and get on with work.

In March 2009, my temporary contract was up for renewal, but I had an interview for another administration job, which was on a permanent contact, and so I left East Durham College on 6th March 2009 to go to Learning Curve.

March 2009 - March 2010

This first year at Learning Curve was the best and worst year of my life. Health wise, my hip was getting progressively worse, but I was establishing myself as a good worker and settling in well. In the November, between having botox on my ankle and my hip "bursitis" getting worse, I had to have 3 months off on the sick whilst on crutches and between home and doctors and on tramadol.

Whilst off on the sick, funding changed and work and there were risks of redundancies at work. Once I found out that, thankfully, I had not been made redundant, I took the decision that, due to my disability, hip, leg, hand, and stamina, I would reduce my hours to 3 days a week, giving me the chance to work less hours and rest for four days, which worked for a while.

June 2010

This month was the most memorable for me. This was when the cortizone injections and local anastetic stopped working in my hip. I was referred from my Orthopedic Specialist to a Hip Specialist, who took an x-ray, and informed me, in a way that only this man does, that I had hip dysplasia, meaning that my hip was not fully formed and the plate which protects my hip bone was in the wrong place. I would go on to have 2 major operations to fix this problem. Having these operations, which took place in May 2011 and May last year, meant that I had to have a total of a year off work, for which I wasnt discriminated against.

Now

Now, I have a different job role, and work 4 days a week. I have a specialist chair paid by work to offer me support and a desk which adjusts in height, in case I need to stand up while I work. I now use Baclofen, which means that work are constantly on stand-by for side effects. Although my normal working days are Monday-Thursday, work allow me to pick and choose, for example if I have a physio appointment, or if I am feeling too unwell.

In the up and coming months, I will be receiving botox in my hand, in attempt to reduce the spasticity. For this, work will need to allow me more time to recover.

Although my place of work is hopeful that I will eventually increase my hours, I am doubtful, as 4 days seems to be a balance between earning enough money to live a "normal" life and to minimise the effects of my hemiplegia.

So there you have it, a background into the working life of me. I think its important that although I have hemiplegia, I try and live like any "normal" person, and am employed. The difference is that I need to, and have, found a workplace who understands that I have certain needs due to my disability, and helps me to tend them. I hope that this will continue for many years to come.

Snow, Sunderland and a snug Steph

On the cold, snowy Sunday that is today, I thought what's better than writing about my weekend whilst staying nice and warm after a hot shower an a day of the heating being on with the snuggie wrapped tightly round me.

On Friday, despite snow falling, I popped to my mums, first and foremost because she had my post, which contained a tax disc for my car and a pre-paid prescription card which I needed to pick up the next 300ml of Baclofen.. As I was leaving, she gave me a big bag if cookies to take with me to Wigan, as I was going to an away match the next day.

Baclofen

As you all may be aware, since the first day of the year, I have been taking Baclofen in order to try and relax my muscles and to stop the dystonia, which means that I have too much tone in my left limbs as I am trying to use it. Unfortunately, so far, I feel like I'm taking a placebo. A the moment, no relaxation has occurred in my muscles, and the only side effect I have had is a weeks worth of weird dreams and frightening nightmares. I have not give up hope yet, however, I have to up my dose in the next couple of weeks, and so I can still hope that a higher dose will have a better effect.

Wigan vs Sunderland - final score 2-3 

Finally, an away win this season that I have actually been too! It was, however, not without squeaky bums and a few heart attacks.

We set off from the house at 8am, with inches of snow in our way, to make our way to Sunderland, where we were getting a coach to the Wigan game. Thank The Lord I wasn't driving!

It took around 3 hours to get there, including a stop, and we spent an hour in a pub under the away end at Wigan, called "the marquee" where they served coffee for £1.50 (coffee always a bonus on a cold day).

The match began with a terrible mistake by the Sunderland defence, an within the first 3 minutes, we were a goal down and one of our own players had scored it. This filled the 5000 fans who had travelled down with hope.... Not!

Thankfully, this own goal seemed to be the kick up the backsides they needed, and thanks to a handball in the box by a Wigan player, a penalty taken by Gardiner got us back on Level terms. After this, confidence grew, and Steven Fletcher put another 2 corkers into the back of the net and put it up to 1-3.

After half time, as normal, Sunderland sat back and invited the pressure on. Wigan took their chanc and got a goal back, but thankfully Sunderland did enough to keep the score at 2-3. All in all, an important win, and a great day out.


So after all the excitement of the weekend, I seem to have overdone it a little. Because of the cold, my muscles have seized, and I am walking with my knee bent and on the outside of my foot. Therefore, for the rest if my day, I am going to sit in my pjs and have lots of hot drinks.

I hope everyone has had a fantastic weekend and have a great week ahead.

Love to you all

Steph xx

New Year, Same Steph

When it came to the new year, the only resolution I made was to remain the same and to still be Steph. Pretty simple.

Today, 13 days on, I have done some thinking and have come up with a few more, which, obviously, I have decided to share with everyone who reads this blog.

1. A couple of weeks ago, I was prescribed with Baclofen in the hope that it will relax the muscles in my hand enough to improve function. It hasn't worked yet, but I still hold hope. despite the hope, I can't just expect Baclofen to do all the hard work for me, and so my first Resolution is to up my physio and actively see to get more function out of my hand (whether it likes it or not!).

2. Buy my own Samsung Galaxy tablet. This may seem a strange one to many people, as I am basically saying "indulge yourself in some new technology", but at the moment, I am typing this blog on a borrowed (from my other half's workplace) iPad. My little laptop, which lasted me a good 4 years, is now a well established old aged pensioner, and is so very very slow. Why not buy an iPad you ask? Because I like the Samsung models more, and I don't really like being restricted to apple.

3. I am the proud owner of a Kindle. This said, in the last few months, I have not really set aside any time to read. So my 3rd resolution is to read more. This is where I need help of anyone who kindly reads my blog. Please, please, please help me to gather together a book list for me to work through, by letting me know of any good books that you think I should read. I literally read anything, and will give anything a go, so it doesn't matter what it is...

4. Around 4 years ago, I had a once in a lifetime holiday with my family to Florida, which will be a holiday I never forget (mostly the looks from members of the public when they saw a then 19 year old was riding around on a hired motability scooter). I brought home many memories and many souvenirs. One souvenir I came home with was a cross stitch of Mickey Mouse self portrait. My fourth resolution, after starting it today, is to finish it. This resolution is not just for this year. It is massive and is the most complex cross stitch I have ever attempted. It will take me years. But this is a promise that I will finish it...at some point.

5. My fifth and final resolution is to try not to be concerned at the things I can no longer do. I have learnt, very recently, that age has an effect on Hemiplegia. I have also learnt the hard way that not everyone in this world will help me, and they don't all care. I have a hopeful, but very trying year ahead of me, and I need to learn to be happy with what I can do. This has been a problem of mine recently, which has lead to me feel frustrated and down, and I need to try and pick myself back up again. It isn't an easy task, but I need to do it... Again, any tips would be useful.

So that's it. My goals for this year. I'm sure they won't be easy as the were to write in a list, and I'm sure some people would think that they weren't adventurous or interesting, but it's a journey I am going to embark on.

I wish everyone a prosperous and happy new year. I hope whatever you do brings you all great happiness.

Xxx