MS Support!?

MS isn’t an easy illness to treat, unlike some people who suffer I don’t fail over (much) and I don’t have any visible signs that I am suffering. It is all for a better way of putting it all in my head. I ended up in such a mess at swimming today it just feels like something is miss firing in my brain and isn’t connecting properly. I end up with the feeling of what the fuck am I doing! I kinda feel that I am in “other world” along side the one that I am in.

I came home from work at lunch time on Wednesday because I was just sat at work more or less staring into space. If I could of guaranteed I could just be left alone all day I’d of stayed, but with the concerns of fellow colleagues whose support I couldn’t live without it wouldn’t of happened.

I was out with my 4 year old daughter when this happened today, so I couldn’t just fall apart on the spot! I had to carry on.

I am in the system and see my neruo about once a year, and I have the MS team, but as I am not in a disabling situation there is nothing they will do about “the head stuff” if they give me steroids there are known long term side effects so they just send me on my merry way.

This is where my GP comes into play, she does the ground work the hospital wont do, She sorts my drugs. When I am having problems and I go and see her she will sign me off work, and I know that makes me sound lazy but sometime I HAVE TO BE SIGNED OFF FOR MY OWN GOOD!

So today I ring up to find out she is leaving cause she has had enough! let that sink in a moment.

I can’t just rock up to any old GP and go hey I have MS and I need XYZ because they can’t just click there fingers because they don’t know me. They don’t know my situation! Where as my GP does and she is leaving because she has had enough!

How have things got this bad!? That we are losing the best in the medical profession! We sit at work worrying about losing the good people. Well we are losing the good people medically and yet there is nothing being done to keep them! Apart from making things worse!

I have tweeted the conservatives as that who is “in” in Erewash but I am not expecting a response!

MS needs support and treatment that doesn’t involve seeing the neuro for or can see but won’t do anything and of cause the hospital’s wont sign you off anymore.

I am failing apart right now and luckily for me it doesn’t happen often but! When I do I need the health service and my GPs support and soon there won’t be anybody who is the slightest bit good at there job and understands! Then what do I do!? Where do I go for support then!?

 

MS Sucks

I am once again experiencing issues 😦

I wish I could get you guys to feel what it feels like when you just stare at a computer and don’t actually know wtf you are doing?

I was sat at work today trying to concentrate on what ever it was and I just spent half the time staring at it and the other time closing my eyes tightly in hope it would seem clearier when I opened them. I could stare into space for hours I am not avoiding work (I gave up and came home around 3) I just generally don’t know wtf I am doing! The feeling of utter confusion yet I should know what I am doing, except someones moved the information and I can’t locate the answer.

My arms ache and all I want to do is sleep!

Please if you could restore all the information in my head I’d be grateful!

HAHA and the best bit, there is bugger all the medical profession will do about it as it’s not deemed to be disabling enough…

It’s at this time the songs always come to my mind “fight the good fight” Our Lady Peace “hobloo” Muse

Anyone wants me I am probably curled up in a little ball somewhere crying!

Hold on Summer is Almost Here

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This picture is of almost every staple I have taken out of things at work over the last seven years! When I first started in my current job I was more or less presented with a large pile of documents and got to scan them in and then file them, this was at a time before paper free! It was also a very depressing time in my life as I was worth so much more than that. I always say to some of the new girls at work that they don’t know how lucky they are before cause when I started I was given endless filing and micro fishing. Seven years down the line now and so much has changed for a start Alex is seven almost eight! So he in away has grown with me while I was been at IRS and I still remember the early days of being up with him and then having to go to work! Cause I always wanted a career and Alex wasn’t going to get in my way.

It has been a roller coaster of emotions to which I guess has ended at me going down to three days a week for the sake of my health! Which yes I know you don’t need to tell me it has been for the best! When someone left work a while back they said to be

“I hope you find what you are looking for”

and at that moment I could of cried probably almost did. Because as fantastic as IRS have been it wasn’t what I wanted to do when I grow up and like many others I fell into that job for safety and security and haven’t got out since.

But alas everything I do has always been for my family, I have always wanted a better life for them and myself and truth be told maybe IRS is the best!? I apply for jobs here and there but there is so much risk attached to me moving especially if my health fails over! Because if I move I will be the new girl, last one in first one out. Plus I don’t interview well!

There are also some big challenges coming up in the Sheldon house hold on the horizon that maybe I am just better off sticking for at least another year!?

I am writing this novel, would I be able to do that if I changed job for a start and I am a third of the way through my study! *cough*

But all this a side people are dying, and again it’s people that effect me someone close to home recently and then of all places I learned of someone else today that I knew when I was younger and all this makes me think why am I sticking when there is so much more out there I could do!? Then this leads to everything else of did I go down the wrong career path at what point in my education did I do something wrong! Why am I not clever enough to do certain job, my health and the big wack on the head when I was younger probably didn’t help and now it’s too late!? Because I have a family to support. But then I see a friend of mine who used to be a teacher and now she is a dr in training and she has MS on top! If she can do it why can’t I?

There are so many amazing people out there fighting bigger battles than I am right now! So why am I just settling!? All those staples I have collected because trust me it’s easier to put them in a cup than in the bin must represent something!? I have so much more I can give but yet I chose to settle!?

We are told when we are younger, we can be anything we want to be, and decisions we make for Alex and Melanie now unknown to them will effect them for what probably will be the rest of there lives.

I hope at some point I do though find what I am looking for, but if anyone has seen it I’ll be glad of the direction towards it!

InspireD

Hey,

So I have MS (Multiple sclerosis) its such a great illness I can’t even spell it

Today I went to Oxford (108miles each way) to take part in some research to see if Coco can improve fatigue and I am sat in bed having been up since 5am waiting for Frozen to finish so my daughter goes to sleep! So anyway by the end of the week I will be drinking hot chocolate in the morning to see if it helps, so fingers crossed on that one. But I met someone who really inspired me today.

She kinda made me wish I could be a research assistant! and also she said that I should continue blogging and just write what ever (haha) so here we are AGAIN!

We have had a family death which came as a bit of a shock to all concerned! Esp as I get a call at work on Friday telling me I need to come home so I can get Melanie from school. So thats been hard, on two accounts I am supporting my husband and children in some degree while feeling it myself! But I guess it’s a bit like when Andrew’s best mate dieded.

my story seems to be at a stand still 😦 I am still in my three month period to whether I will be accepted by my chosen mentor…) maybe I am better off dictating it!But I’ve just not had the time to do anymore dictating… So maybe tomorrow..

Anyways enough rambling

TTFN!

 

Yesterday…

So yesterday was a bad day 😦

So I spent yesterday struggling with MS and my legs again, a girl at work told me she was too hot and I proceeded to come back from the toilets to offer her my jumper, as I just got all confused and then spent the next x trying to work out why I had offered my jumper if she was too cold!

Then came the bad news that one of my work colleagues has cancer for the 2nd time, and that broke my heart and I wanted to cry! Because the last person who I knew who had Cancer for the 2nd time being it breast cancer died, I was like I am not going to cry until she has left work at least, but I managed to hold off and I still haven’t cried! But thinking about the other person who died just breaks my heart and I was a bit like my MS is bad again cause it’s Winter time and now I am being told someone else has cancer again! 😦 So yesterday no writing was done and I pretty much sucked! Having only got the chocolate next to me now!

On the writing front, I went to a talk today by an author at the library in Nottingham, which was really interesting! And I have also been asked to review this guys book! Does that mean I am a proper blogger now? They have sadly only sent me the kindle version but it’s a start!

As for my writing career I sent the guy who did my creative writing course the first bit of the story I am writing at the moment! And asked him if he would read it and tell me what he thinks as it’s what I am looking to submit to the mentoring thing!

So tonight, chocolate fingers, location work for my story and sleep possibly! The sleep probably will win over everything else!

Much love

X

Sunday

So it’s Sunday and I have already done my stunt on the Park from Junior parkrun, I think Parkrun for the kids is such a good thing, everyone is so supportive of the kid in last place that I bet isn’t seen in adult parkrun… So there goes any chance of me starting running again. But going on from this my legs are bad again so maybe running isn’t such a good idea.. Something about not over doing it (haha)

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I have also seen something about a mentoring scheme by one of the authors that I like, did I mention this the other day? Mentoring I really have no idea where to start in my application! I am probably going to submit the first bit of my current story but then I’ve got to come up with 500 words of why I want said person to mentor me arg!!!!

Talking of my story I wrote some about the autopsy last night. I am still struggling with the bit of getting the dead bodies ID out there. There is a forum that I am on for writing and they have suggested things, but they don’t sound right or feel right… My MC is ex MI5 and has lived a “normal” life since she left so why would she be keen in investigate the body!? She has a new life, name etc.. Who ever said this writing stuff was easy!

As for everyone elses favorite subject, my legs are bad which I guess the cold doesn’t help, says she who stood in the middle of a field at parkrun in the cold! Maybe I need to get some of those tight things to go under my trousers! Leggins lol! Or possible tights… But I don’t get on with tights! arg. My head went horrible yesterday with the whole not knowing what I was doing, in almost tears in the supermarket, I said to the kids can you behavior in Aldi or do we need to leave it and go home!? and I couldn’t cope with cooking dinner 😦 #MSSUCKS We shall see what this week brings but I am trying do hard not to be written off work again!

By the Grace of God…

I’ve got that Katy Perry song in my head…

Yesterday was pretty much a write off, stupid MS I spent most of the day waiting to go back to bed and cuddle, sleep and eat chocolate. You see the problem is I only work Monday, Wednesday and Friday. So when I wake up on a work day and feel shit, I go to work because I know I’ve got the next day off. Well I left at 4pm, spent the day struggling through didn’t bring my wallet to work so no chocolate!!!! I was in a proper mood! I even forgot I was supposed to me lunching with my sister in law! FAIL! Got home had dinner and rushed the kids to bed so I could go to bed! That sounds bad doesn’t it! MS mum failures 101

Then this morning Andrew wouldn’t get out of bed, and didn’t until 8.20 which means shouting at the kids to get up and get dressed and move!?Why should it be me all the time who has to get them up on a day off!? So he was been in some what of a grump all day! I think he get seasonal adjustment disorder but then I look at him and this if you just got off your arse and did something… I’ve got bloody MS which I am pretty sure is worse and if I have to do shit then…I’ve not said this to him as I think it would cause a bigger huff! A bit like me asking him how we are going to pay for all these Christmas presents.. I hate Christmas!

On the writing front which is why we are all here! I am thinking about entering a sort of competition to get mentoring from Angela Clarke, I just wish I knew what to write for my statement AND my 1000 words piece! I was thinking of contacting my creative writing tutor and asking him for help. But Andrew can’t see how he could help! Alot of help he is (Andrew) I don’t even know where to start!

Maybe I should just keep plodding on with what I am writing, to which I have no idea where it is going… So yeah pretty much definitely need help 😛

X