Welcome back says the voice on the radio

But I never left, I was always right here.

I’ve been kind of quiet recently just trying to get my head down and get on with, well, life! Despite knowing nearly 2 years ago the chaos PIP would cause, then living through my own battle with them and eventually winning, still nothing has changed with how they handle this horrendous system. Stories are still coming out every day about how disabled people are becoming housebound, having to give up work and struggling to get through day to day life.

And now there is a new evil on the block, Universal Credit. Everyone is aware of how badly this is administered but yet they continue to roll it out. And again, they have no idea what MS is! Asking me if it was terminal was not a nice thought to have in my head for the rest of the day but that’s what happens when a benefits system that you may need due to a medical condition is administered by someone with no medical background. So I’ve applied for it as my health has detioriated so badly since going through the PIP process that I’ve had to go part time at work.

Already we’ve been down to the job centre twice with info and we have to go back next week with more. All this work and no money till at least mid November. Dunno how they think people like me survive!

Don’t wanna come on here just to moan, although it is the best place to do it! Let’s see how this will play out!

Save the disabled from May

After having to go through the PIP process, losing my motability car making me unemployed and having to claim ESA, housing and council tax benefit, having to fight to get the car back through the appeals process and new scars appearing in my brain whilst going through it all, 2016 was the worst year for me that I can think of since being diagnosed with MS in 2004! And it’s all because of the tories! They are systematically attacking the disabled in the UK and are taking away our personal independence causing us to be unable to get through life. You just need to look at the number of suicides related to people getting their benefits cut, leaving them out on their own but unable to better the situation due to poor health.My greatest fear is that all the cuts the Tories have made in the last 7 years were watered down versions of what they wanted due to the coalition and having a small majority and so they wouldn’t get their true cuts passed. But what if they get a much bigger majority after tomorrow?? Who will stop them then?

Scotland is uniquely placed to avoid being trapped in their chains of brutality. We cannot keep allowing them to take away our dignity and personal independence. The Scottish parliament, whilst taking longer to sort it than I’m happy about, will control the welfare powers in Scotland from 2020 and can make a fairer system for us. 
With the demise of Scottish labour we’ve seen a rise in the Tory vote here. But if your only reason for voting Tory is to avoid another independence referendum you can simply vote no when that vote takes place. It’s not worth ruining so many lives just to tell the SNP you’re not happy with them and their crusade for an independent Scotland. If anything you should do that at Holyrood in 2020 when it matters, not when sending MPs to Westminster who have no control over Holyrood. 

Ruth Davidson, Kezia Dugdale and Willie Rennie all say they can stop the SNP holding another referendum but last time I checked it was Holyrood who voted that a new indyref should be held. So they are not talking about stopping the SNP, they are talking about stonewalling Parliament! Are they trying to make Holyrood obsolete and get it shut down? What other issues do they think their MPs in Westminster can stop Holyrood from passing? I find that a very frightening thought!

If things continue down this line then I need the option of an out to make sure I get the best care and help I need. To make sure I can continue to work so I can contribute to society. That is why I must vote SNP for the first time in my life tomorrow. I need the option of independence if we get a bad deal or no deal as Theresa May has said (a lot) as we will need more control over how our country manages the fallout from Brexit. Greater control over our finances. Making sure our welfare state looks after those that need help most. 

Scotland has one of the highest rates of MS sufferers in the world if not the highest rate, so we need a system in place to ensure we can live our lives to the fullest, something the Tories tried to take away from me. We need to get May out and protect ourselves.

At Holyrood for MS Awareness Week

I was asked to speak at Holyrood by the MS Society about the importance of MS Nurses last week. Had never actually been to the parliament building so it was a wee adventure. This is the speech I gave

“Hello and thank you for inviting me here tonight to speak about my experiences of the MS Nurses and the important role they have played in my life.

I was diagnosed with RRMS 13 years ago when I turned 20. I’ve been lucky in the sense that I still see the same neurologist and MS nurses now at the Anne Rowling Clinic at Little France as I did when I was first diagnosed in 2004. Stress has always heavily affected my MS by exacerbating previous symptoms and causing fatigue, and so having the consistency of the same MS Nurses reduces my worries when I am meeting them for appointments, as they are familiar with my medical history and aware of how having MS has affected me both physically and mentally.
I’d like to share with you some examples where they have provided me with advice over the years and where I feel they have gone the extra mile to provide me with the support I need
I see the MS nurses 4 times a year but due to the unpredictable nature of MS there have been quite a few times that I have needed help inbetween these appointments. One of the more recent examples of this was when the vision in my left eye suddenly became blurred and my eye became extremely painful. I was able to call and leave a message and one of the MS Nurses called me back within 24 hours. I described to them what was happening and they asked me to come into the MS Clinic to see them the next day. Once there, they had me go for an eye examination which quickly showed that I had a case of optic neuritis. They then arranged for me to meet with my neurologist where we discussed moving onto new medication to better manage the MS. All this was done within days of my original phone call. Again, the speed with which they act can help contain some of the stress and the worry when new symptoms like this just suddenly appear.

During my appointments, we have discussed issues such as stress and pain management and physiotherapy. Because the MS nurses keep aware of the various groups that are around the area, they have been able to suggest organisations who can help with these things outwith the NHS as well as within. This can also reduce the time it takes to start these kinds of programmes. MS can affect people in so many different ways so that not all MS sufferers will have the same symptoms. This means that MS Nurses need to have a wide range of knowledge so they can offer the best support.
I was also able to go to them with my concerns when I had to move from DLA to PIP at the start of 2016. They were able to share with me what they knew about this new system and what kind of information I would need to supply with my application. I was able to rejig my appointments when I did not receive the mobility component until I could get someone who would be available to drive me in. I got my car back, but that’s a story for another day.
Through speaking to others and researching it myself, it is clear that MS specialist nursing needs to be resourced to a better level. The fact that my nurses are doing such a great job in spite of the number of cases they have only goes to prove how committed and passionate they are about taking care of and supporting their patients. Hopefully all MS sufferers in this country can have that same care we so badly need.
Throughout all these years with my various relapses and unexpected problems, they have never ever made me feel like I am wasting their time. They always listen to my concerns and address them, looking for ways to make things better and easier for me. I owe them a great debt of gratitude and I really do not think I would cope as well with MS as I do if I did not have their support.
Thank you for listening.”
I hope my story went down well with all who attended and that the MS nurses in Scotland get the help they need so they can give the help and support people like me need on a daily basis.

Do not be fooled!

My blood has been boiling since the start of the week and it’s not cos there’s been some sun!

As much damage as the Conservatives have done to the poor, the elderly and the disabled with a coalition government and a small majority holding them back, imagine what they will do with the predicted 50-100 majority??!

And without a hint of embarrassment or shame, they announced their bribe to us. They will allow people to keep their specially adapted mobility for up to 6 months after they are turned down for PIP! Well that’ll make everything alright won’t it??!!

This is a party that have cut ESA, introduced the bedroom tax that caused a lot of problems for people with carers and separate rooms for medical equipment and brought in PIP to tell us all we’re not disabled enough! And that’s without mentioning the idea of limiting child tax credits to 2 kids unless you can prove you were raped by completing an 8 page document. No doubt you’ll be assessed which we’re assured the DWP will do “sensitively”. Cos the DWP have done a great job of that with ATOS/Capita asking disabled people why they’ve not killed themselves yet haven’t they?!!

My dad thinks I’m worrying too much but after all I went through trying to keep my car, losing it and then fighting to get it back I really don’t want to have to do it again. As they only set limits they could get away with and not what they really wanted, I reckon they’ll squeeze it even more if they get their majority and I as well as others will have to fight again.

So we will soldier on through the next 7 weeks hoping for the best, hoping people remember just how far the UK has sunk and says no more!!

Coping with hypocrisy!

I don’t tend to get political on this but what the hell is going on??!!

Just to state I voted for Scotland to remain in the UK and voted for the UK to remain in the EU. I am now though heading towards voting to leave the UK. Not necessarily to try and get back into the EU, I’d rather be in the EEA, but because of the disdain shown to Scotland by Westminster!

Scotland is told it should stay under Westminster rule so that we don’t leave our biggest trading partner because of how economically damaging it would be, whilst at the same time told by the UK that leaving the EU and the worlds biggest single market will be fine. What??!

Scotlands told we need to have answers before holding a referendum, but no answers or plans were/are needed before and after a referendum to leave the EU. What???!

Britain voted to regain sovereignty over its parliament whilst now telling us that a democratically elected Scottish parliament will not be listened to about calls on dates for a referendum. Seriously WTF???!

I never have, nor ever intend, to vote SNP. The simple fact is I don’t think they should build an independent Scotland in their image. In the event of a Yes vote, parties should set out their manifestos on how they would design Scotland and a new election should be held. Pretty much the opposite of what Westminster has done!

I cannot stomach double standards. All the arguments to leave the EU are now the reasons given to remain in the UK. What??!

We were told all devolved parliaments would be spoken to in order to plan the best Brexit possible for everyone but so far we have not been listened to. The “vow” for what Scotland would get if we remained in the uk 3 years ago have still not been fulfilled. The promise that only a no vote in 2014 would keep us in the EU proved meaningless. So can anything Westminster say be taken as truthful where Scotland is concerned?

I stand by my vote to remain in the uk. It was the right decision at the time. But times have changed. When you see what the conservatives have done to the disabled in this country and realise that they are there for decades thanks to an incompetent Labour Party, it is clear how they view the people who put them into power!

The hypocrisy needs to be taken out of the argument and pointed out each and every time, which is about every 5 minutes. If the SNP truly want an independence vote to go their way, then promise to call an election after the vote so that we, the people of Scotland, can choose the parameters of our independent country!

The red pill or the blue one?

I take quite a few pills to deal with the pain caused by nerve damage. Pretty sure I rattle as I walk down the road. They don’t actually work so just trying to power through it nowadays. Problem is I don’t really remember when I run out of them cos kinda feel I take them for no good reason. Just feels like taking pills for the sake of taking pills.

That’d be fine except they also act as antidepressants as well. As a result think my brain chemistry is totally messed up. No point taking them for pain anymore but every time I run out them it becomes clear I need to take them for the other thing!

I’ve gone through 4 days feeling like I’m a breath of air away from crying! It’s surreal, not watching anything sad, not thinking of anything sad, not even getting down about my life. There’s just no reason for it. Have I become dependent on them? I wouldn’t recommend suddenly stopping tablets you’re prescribed I just struggle to remember when they’re gonna run out!

I look for the funny in everything, even in things I probably shouldn’t. So why does my body need a pill to balance the chemicals out? I really should have super powers or at least be psychic by now.

It’s ok if I need pills for the rest of my life. Kinda used to that idea these days but if I could get by with as few as possible then that’d be great. Until they make one pill though I’ll put up with being a human rattle. Maybe record that on my next song instead of drums!

The universe is conspiring against me!

Ok maybe a little extreme but it’s not far wrong. Dealing with this cold that’s totally knocked me out and now thinking I’ve picked up a virus to go along with it!

I don’t know if other MS sufferers deal with their body being affected by some other illness like I do, but I don’t bother the Drs with it. I’m used to my body falling apart for a few days till I shift what ever bug I’ve picked up cos they’re just gonna tell me to rest and things’ll go back to normal when it goes. But if this doesn’t sort itself out by Monday morning someone’s getting a call! This is where taking tablets daily to lower your immune system really doesn’t feel worth it!

I’m running off about 8 hours sleep over the past week as I’m waking up every hour of the night since the weekend. Now if I could do that sitting and being wide awake I could get loads done. Dunno what but whatever it was it’d be loads of it!

Getting wound up cos I was getting lots of hours in at work but that’s kind of disintegrated now. Late in every day I can actually get in and spending most of the working day at home 😡

It should just be an unwritten rule, life long incurable condition means you can’t get anything else. Science is really letting the side down here!

Tomorrow is a new day though and maybe I’ll get in for some time, but until then I will piss and moan and then play Fifa or something. Time well spent(!)

Time is fleeting

I don’t think it’s possible to do less than I have this weekend and somehow I’ve done too much! And too much consists of washing 6 dishes and taking the rubbish out!

Between doing as much work as I can and getting choked full of the cold suppose I can’t expect the ms to stay out of it and not add to the problem.

So I’ve spent my time playing batman, mad max, watching the matrix and watching tons of 9/11 conspiracy videos! And people say I waste my days(!) If it’s not that conspiracy it’d be the Mandela effect instead! Or maybe it already was??!! 😱

I do need to use my time more productively. Need to sit down with a notepad and a guitar but the thought alone of that just knackers me! Maybe next weekend!

The proof is in the pudding!

Exciting week with my latest chat to the press about how important the motability  scheme is to people like me. Nice wee section on reporting Scotland and BBC Radio Scotland so good they are still interested and hopefully Holyrood was paying attention with the welfare powers moving north soon.

Had a good strong start to the year getting a good amount of time in the office, but this week things outwith my control pop up. I get a bloody cold

Can’t fully express what this does to my body! My legs go where they please, they give way under the weight of my body (thank god I’m not bigger!) and my arms don’t want to lift a pen never mind anything heavier. Whole body just feels so tired like I’ve spent a week hiking through the jungle or something. 

So work has kinda been cut this week it takes so long to wake my body up enough to deal with the day. And this is where having my car back is just a blessing! I’d have no way of getting to work on my own in the middle of the day but having the car means my day isn’t just wasted. It also mean I can cope with getting less money and not worrying about someone coming to pick the car up. I went to work yesterday for 11 and today I got in for 1. I lose hours but it means I can do my bit, pay my rent and pay my taxes. All the things Society got billed for when my independence was taken away from me!

So my weekend will be spent barely moving to try and shift this damn cold. It’s the little things that’ll knock you down. Hopefully next week runs smoother and I can make up some of the missed hours.

Who’s running the country???

Is anyone else thinking we’ve all been left in the wilderness?

I’ve seen two stories today about the chaos PIP continues to cause. This is probably a quieter PIP story day than usual. So why is it that everyone can see it’s a broken system apart from the people that we, presumably because we thought they were smart enough to make decisions, put in charge??! The lunatics are running the asylum! I know when I lost my car it felt like they’d cut my legs off. I wasn’t disabled enough for them so they made me feel more disabled?!

Something needs to change. Someone’s gotta be blamed! 

But the same stories continue to be told and those who are supposed to have our best interests in mind seem to be MIA. I’d say at least we can vote them out but if we did who would we replace them with?? I fear this will remain the status quo until someone steps up and inspires change!

But don’t get downhearted! Change is an inevitability. People power can change the world, we just have to wait for enough people to get angry!