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.
There’s a story in the papers today about a former DWP worker who now relies on PIP and because she know the ins and outs of the department, think there is an 85% chance she’ll lose her car and become housebound!
How are these stories still being told? How can nobody have intervened and flat out stopped putting some of the most vulnerable people in Britain through hell??? It really makes you wonder what the hell needs to happen to shake the system up. People being housebound? It doesn’t matter(!) People not able to go for GP/Hospital appointments? Reduces the strain on the NHS(!) People needing to quit their jobs? Job openings for the unemployed(!)
I was just telling someone last week that it’s not just being refused that turns our world upside down! Before I had to apply for PIP, I panicked! When I filled in the form, I panicked and the MS flared up. I had the assessment and it all got even worse! I was refused twice and my world, and my body, crumbled along with an MS relapse! If I had the energy/talent I could write one hell of an album!
Actually I was reminded of some song lyrics that really spoke to how i felt heading towards the appeal,
🎶Slowly my sadness, turns to rage and we wonder. How can these scars ever heal when all is said and done!🎶
And it’s the rage that got me to where I can actually go outside thanks to the victory and return of my car!🙂
But the scars? The scars I feel everyday. My legs are shot to pieces. There was never much strength in them but now there is none so I’m in the queue for physio. I got my PIP forms in December so it’s a full year and the issues remain both for me and for the many going through this.
🎶So tell me when will it be over now, how soon? How far must we go to prove to you.
So we will wait and we wonder.🎶
Well I wasn’t shocked yesterday kinda saw this one coming. There was a new scar showing up that wasn’t there 12 months ago in the MRI scan of my brain (I do actually have one despite the rumours). I can’t prove when or why, but I’m more than comfortable blaming the stress of the DWP and PIP for this!
My doctor could tell I’d had a high stress year and she was hopeful that things could start getting back to normal now. I’ve made a big mess up there over the last 4 years, 3 attacks.
The good thing is it’s not affected me physically it just means I don’t really remember my name. But I guess that’s like not remembering my phone number, I never call me!
With an illness like MS, where stress can exacerbate it, you need to be prepared for the possibility that battling PIP comes with its problems. Still glad I did it though. Those people needed taking down a peg or ten! It’s all about looking to the future now. If you go into it knowing there might be a price to pay for the battle, at least you can prepare a little for it.
Given me a few things to think about though. Need to look at medication options as I may have to calm this thing down and get it under control. 3 attacks in 4 years certainly has me concerned and the neurologist has basically left it up to me to decide what to do next medication wise. I hate when they do that though cos if it doesn’t work out I can’t blame anyone but myself!!
As a side note my cheque finally cleared this morning so I can organise sorting motability out with the hilarious balance I owe them and can officially order the car. Guess what??! Motability is closed at the weekend so I can’t move things forwards till Monday 😂 I’m sure this process is character building or something
Well in getting my evidence together I’ve found out something for sure that I had only suspected before.
I had a nightmare summer last year. I was unable to leave the flat and my head was just constantly spinning. Made it really hard to move around, to eat or to sleep. In a letter to the PIP appeal board, my neurologist has confirmed that this was in fact another relapse. I had an MRI about a month later and I’m assuming they spotted new scars when compared to my previous scan. Off for a new scan later in the year but pretty sure nothing new should be there. Hopefully.
I think the average in RRMS is about 1 every 2 years. This attack last year puts me on an average of 1 every 3 years.
At least I know now. Was positive at the time but nice to confirm I wasn’t just panicking for no good reason. I’ve gotten pretty good over the last 12 years at knowing what my body is up to. I can recognise what’s a new symptom and what’s just an echo of previous attacks.
The only concern now is that these DWP pencil pushing independence takers, will push me towards the next attack through the stress of it all. Just gotta keep plodding onwards though. I will always refuse to let my MS stop me!
So I’ve now started going once a week and today was my first session after the initial 3 week block. I’ve continued to try and note any change or to see if I could feel that I haven’t been in the tank since Saturday as others had said they could feel when it was time for them to go back. I’m still waking up as though I haven’t slept and still feeling the aches and pains that my meds don’t seem to touch! I like to think I’m getting out of bed in the middle of the night and instead of sleep-walking I’m sleep-marathoning instead! I’d try fundraising on this basis but I don’t think people would believe me. Could set up a camera at night but I’ve seen paranormal activity so not a chance in hell I’m doing that.
So as it stands I’m not noticing any difference! Now I’m not saying it doesn’t work for some people but pretty sure it doesn’t work for all and wouldn’t be surprised if I fall into the category. I will however continue going weekly for a month or two at the middle level of 24feet and hope that changes.
I’m currently feeling like I’m having some kind of a relapse with symptoms flagging up in a new place so really need to contact someone but my time management is pretty crap, always has been, so I don’t know if that would counter any kind of benefit I should feel.
If I notice anything between now and next Wednesday I shall post it so I can keep track of it but if not then I shall right about my next session next week. Take care all and don’t let the demons drag you down!
Yeah I kinda zoned out over the weekend and then was pretty knackered after yesterday’s 1st session of 33 but making up for it by writing about it now.
Yesterday was a quiet one and was just me and 1 other person. She was very happy with how the oxygen helped her and so like everyone I’ve met so far she was a regular. I didn’t really notice a difference at the different pressure but still got a few days of it to go. Friday kinda threw me off a little and followed me through the weekend so just trying to set myself right again. The symptoms of my relapse at Xmas seem to be surfacing again but this time it’s in the other eye! Unsure if this is another relapse or my eye just simply hurts. Gonna play it out and see if it gets better on its own before I think about asking to get my eye scanned see if they can see anything!
Today. I am currently sitting in the tank for my 2nd treatment at this level. Again it’s just me and one other person. I thought this was meant to be the busiest level but so far it’s not turning out that way! Might actually suit me better anyway. The man I’m with started this a few months before me. He said he was still unsure whether or not it does anything to help but he figured it can’t do any harm. I’ve always believed when I try and do something good or healthy my body reacts negatively. So far I saw a psychologist twice, had a relapse. Saw a physio twice, had a relapse. Sat in oxygen tank for 2 weeks, still dunno what my left eye is up to and just hurts! Can still see out of it normally so trying not to to jump to negative conclusions too fast so willing to just see it out and hope it behaves!
I asked him how he chose which pressure to keep coming back to and he said he still hasn’t decided. I’m trying to think how I’ll decide but maybe my mind will magically be made up at the end of the week..
I realise this is lots of info to read through so thank you if you made it to the end, now i will just breathe in pure air for an hour and keep looking for a change. Cya!