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!
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.
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!
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(!)
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!
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.
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!