Hello, how is everyone? I hope you're all doing as best as you can and you've had a good week.
This past week I've been back in Sheffield to go and have the second appointment that
I needed to have for the FES machine. I'd mentioned previously that obviously the first
meeting was getting the machine, learning how to use it and whatever else. It's been two
weeks now. Yeah, two weeks. But yeah, I was there, went in, spoke to both the senior physio
and the scientist. Really, really good meeting. Absolutely fantastic to be honest with you.
A pair of them were brilliant. They checked that I was using it correctly, putting the
probes in the correct places and whatever else. And actually, it seems I've been doing
it correctly. Which did surprise me because I must admit at times I've been finding myself
not necessarily putting the probes in the correct place or at least doubting myself.
So actually the fact that they have been, I'm quite impressed. I'm quite impressed.
The top probe has to go on a particular part of your leg where you sort of have to feel
away from the meaty section for a bony bit. And that bone is just before where the nerves
sort of split off and go into different positions. So yeah, I've actually been finding that and
doing it well. The fact that in the last couple of weeks with the FES, it's changed everything
for me when I'm walking, I'll be honest with you, it really has. I know I've said this,
I'm going to try not to do too much dwelling. But again, it was nice to sit down and be
able to explain to them just how much it's changed things. Because it has changed them
quite drastically, if I'm going to be honest. It really has changed them quite drastically.
So again, that was good. When it came time to sort of talk about what sort of stuff it's
changed for me in terms of how much I can walk and whatever else. I did make it very,
very clear that in terms of safety, it's changed quite a lot. It's changed quite drastically,
I'll be honest. When I'm wearing it, I feel safe. I don't feel like every step I've got
a monitor where my foot's going because I feel like it's going to fall all over a place
or it's going to trip me over. But again, at the same time, what it doesn't do, and
I've said this a million times and I'll say it a million more, it doesn't allow me to
walk any further than previous. But I'll take that because I can walk safely. But yeah,
the crux of the meeting was, again, it was brilliant. It was very, very helpful. It showed
me that I am using the machine correctly. Again, what I'm not doing is I'm not using
it as high a level as I possibly should right at the start. I'm starting my day with it
as low as I can possibly manage with it to lift my foot up and then building up. So yeah,
that's where we are with that. That FES is now with me for the long term and I'm quite
looking forward to having that available to me because again, it's made things much, much
more simple. What I've got coming up today as you're listening to this, it's going to
be Monday, I've got a telephone meeting with my nurse at the doctors because it's come
time for them to sort of have a look into whether maybe some assistance for fatigue
might come in useful because at the moment, no matter what I'm doing, I'm getting really
exhausted very, very fast. At the moment, that exhaustion is becoming quite apparent.
It doesn't really matter too much what I'm doing, the slightest little thing and I just
want to go to sleep. I'll be honest, I just want to go to sleep. Pains, aches, all of
it is particularly bad and it's not great. So hopefully tomorrow during that meeting,
we can come up with an idea as to what we can do to try and attack that a little bit.
Don't get me wrong, I know it's not going to go anywhere, there's no cure, but if there's
something we can do to try and limit the effect that it has, that'd be quite nice. I'll be
honest, that would be quite nice. I've got a couple of thoughts in my head as to where
we might possibly be going with it, but that will be a conversation for another time. With
regards to other bits and pieces, I have, and I'm not going to go into too much detail,
but I've sort of moved on ever so slightly, a little bit closer to a potential job. It's
something a lot different, this job to something I've ever done before in my life and there's
four parts to the selection process and I've passed the first two parts, so there's another
two to go. Fingers crossed, fingers crossed I can sort of plough my way through and figure
out the best ways of doing it, because I must admit it's a job I really fancy and if it
happens I'll explain it, but there's still a long way to go. So in all fairness, it would
be wrong of me to start talking about it at this point. In terms of myself, yeah, I'm
going to say that I've been finding things a little bit more difficult than I have done
previously and I can't quite work out why. I think to be honest it's probably the fatigue
that's given me a real good kick in, because it's sort of at times making me a little bit
do I do certain bits and pieces or shall I just try and sit down and again I've said
it a million times. I'm trying really hard to not let it win, I'm trying really hard
to not just sit down, I'm trying to keep fighting and keep going, but actually at the moment
I'm finding that quite difficult. It's not particularly easy because the exhaustion is
just awful and that is kind of where I am a little bit. I've been today doing little
bits and pieces, nothing really stressful, nothing major, more than anything burning
the kids old school books. Some of the kids have left school now, they've finished their
exams and hopefully pushing on to pastures new in terms of the working world or college
coming up or maybe other learning. So they're school books that they no longer want, they've
gone in the flames, they've gone on fire, which was fun and to be honest with you it
wasn't massively, I'll be honest with you I wasn't doing it on my own, but it has knackered
me out, I'm going to be honest with you, absolutely exhausted and I've got to be up early tomorrow
morning. Yeah I've got to be up early tomorrow morning because we've got a new wardrobe coming.
The decorating in our bedroom has finally been finished. My dad's done a brilliant job,
bless him, he really has done an incredible job. It's so nice to actually wake up and
look at these nicely wallpapered walls. But yeah now we've got this wardrobe coming,
I'll assist you really early tomorrow morning so no laying, absolutely no laying, which
I could probably do with if I'm honest. I did say to myself I was going to have a couple
of days rest over the weekend and it hasn't happened. There's been too many things to
do. But you know we carry on, we crack on and we try and muster the ability to see the
new the next day and just carry on. But yeah I'll be honest, there's quite a few things
I'm going to say, there's quite a few things that have been giving me struggles. And yeah
there's been, again what I've got to say is it's nothing new, it's all old stuff that
just seems to get worse. Again I should take as a positive in terms of the fact that it's
not seeming new. Maybe just maybe the okravas is doing what it's supposed to do. I don't
know. But yeah I mean it's just this old stuff that's getting worse and it's not, I've got
to say when I was doing my podcasts a good few months ago now where I was constantly
saying you know I've got this new issue, that new issue, I've got this, that or the other.
I'm not having to do that now. Yes there's been little bits and pieces absolutely. But
where I was, I had probably a two month spell where I'll be honest with you I was actually
getting quite concerned, not even quite concerned, I was getting absolutely terrified of what
was happening because it was always, always, there was always something new and it wasn't
something that was just gentle, it was on a scale of 1 to 10 a flat out 8 and a half
minimum but currently as I say it's just old stuff that just seems to be getting worse
rather than new. Although saying that was one issue the other night and I cannot believe
the pain I had in my left hand side, it genuinely, genuinely felt like, felt like I was on fire,
it really did and so it was the left hand side and it literally did feel like somebody
had lit a fire on that side and the pain was excruciating. Thankfully it didn't last massively
long but wow when it was there it was, yeah I'd say probably a 9 out of 10. Only time
I've ever felt anything like it was pre-knowing about MS and I had to go to the hospital from
work because I was in this enormous amount of pain and got to the hospital, my dad was
with me, he got me booked in because I couldn't even go up to the counter to book myself in
to be honest. I was just sat there and it was, yeah that one was a 10 out of 10. But
yeah they took me in to the triage, the nurse saw me and she took me from triage actually
straight in to a little room on my own and she stuck all the bits and pieces in my arm
and whatever else and I had a drip put in running some saline through and actually that
night they was talking about potentially moving me to another hospital to get a CT scan done
because at that point they were wondering if it was a blockage in my heart and thankfully
the CT scan came back because they didn't move me in the end, they actually had someone
come in to the local hospital to perform the CT and thankfully it wasn't, it was any issue,
they couldn't actually say. The saline and the painkillers that they'd given me kind
of helped a bit so later that evening I was released, come home and by the morning it
pretty much passed. But actually say this was a very similar kind of pain that I got
the other night, at least now I kind of know most likely what caused that first time off
because it was only probably about 6-8 weeks after that that the doctor told me that I
should expect the diagnosis of MS. I'm just having a sip of my water. So yeah I mean it
was very painful, very very painful and actually sitting here I've just started feeling and
I've just had some of my water but my glass is a little way to the side of me, I've just
felt like somebody's dripping water on my right wrist. I normally get that on the top
of my head not actually on my wrist, that's a bit of a strange one. But yeah I mean that's
obviously a summit that happened in the past that just sort of gives you an idea on this
pain that I had in my side a couple of nights ago. Other than that I'm going to tell a little
story and it's a story that to be fair it's a bit strange and at the same time really
sweet. So last night now I was absolutely out for the count but something happened that's
never happened before, never. I said goodnight to the kids and Lisa still needed to, she
was going to go and say goodnight to them. So once I'd said goodnight I went and just
sat on the bed, I hadn't put my pyjamas or anything on, I was still in my jeans and my
top, just had my glasses on, just sat on the bed just to relax. Well when I did that the
next thing I knew, this was probably, I'm going to say this was probably about 10 o'clock
in the evening, I might be slightly out but not by much, it was 7 o'clock in the morning
next time I opened my eyes. Now the story goes that I sat there and obviously dropped
off. Now one of the boys, bless him, brought the hoover into the bedroom because Lisa was
saying goodnight and she needed to hoover something up on our floor and he came out
of the bedroom and he said mum, it's asleep. Okay, so Lisa thought he was joking. So in
she comes and apparently there's me sat on the bed snoring, I don't know where they
got it from, I don't snore, honest. Well I've never heard me snoring so it means it doesn't
happen. But yeah there was me on the bed asleep. So Lisa does the bit of hoovering that she
needs to do, perfectly fine. I don't move a muscle. Yep, even hoover doesn't wake me
up. So Lisa bless her realises that I am completely out for the count. So she takes my glasses
off and very carefully changes my jeans for my pyjama bottoms, takes my socks off, probably
a bit smelly but you know. But yeah she does all of that sort of stuff, gets me ready for
bed and apparently I still don't bat an eyelid, I am out like a light. I don't remember any
of this happening. I'm going to be honest I don't remember any of this happening at
all. So yeah there's me completely out like a light. Lisa's got me all ready for bed and
all that sort of stuff. I wake up at 7 o'clock in the morning and very briefly wake up and
there's always one pillow on the bed that I always take out because I find the pillow
a little bit uncomfortable. So I turn over, I look at the clock, my side and it says 7
o'clock. So without even realising I've removed that pillow and said to Lisa, because she's
awake next to me, I said I've not said goodnight to the kids and they're going to say goodnight.
She proceeds to explain to me that it's actually the morning and I'm just totally weirded out
by it all that I didn't understand. So I just reached across, I got me my tablet, I took
my tablet that I'm supposed to take in the morning and then I'm off again. Yep, back
out like a light and probably didn't wake up till about half ten quarter to eleven.
Yeah, yeah for want of a better thought process I probably had 12 hours sleep. Certainly bouldering
on it. I never get 12 hours sleep, absolutely unheard of. But I tell you what I did not
feel good for it. It really helped a lot. But yeah, I mean the fact that I didn't even
realise that one the hoovering was being done right next to me and two I didn't even know
that I was being changed into my pyjamas. Figure that one out. It makes no sense at
all. But yeah, all I can say to that, because again I knew I was exhausted. I'm not even
going to say tired. Tired ain't even going to come close to it. I was absolutely exhausted.
But that's never happened. That sort of thing's never ever happened to me before where I didn't
even know that I'd gone to sleep. Nothing. And the fact that nothing woke me up. Odd.
Is a big understatement. Really, really odd. But yeah, I thought I'd just share that little
story with you because, do you know what? I actually think it's kind of funny. Again,
it's one of them where I could probably find the negatives in it. I'm not looking for
none of that. I don't want none of that. The negatives can stay where they are. Let's
see the fun side of it. And just wow. Honestly. Just wow. But other than that, for a week
it's not been too bad. It's honestly not been too bad. To say I'm very, very excited. The
prospect to our bedroom being finished off, getting this new wardrobe up and the possibility.
And I can only use the term the possibility of this new job. And do you know what? I'm
going to have to go there at some point. I'm going to have to make this admission. It's
now July. So in about two and a half weeks time. Yes, it's my 40th birthday. Didn't
want to make that admission, but it's going to come out. Everyone's going to hear about
it. So why don't I just say so? And I'm kind of looking forward to the family coming over.
Yeah, we've got family coming over and do you know what? I am really excited about it.
Don't tell anyone because I'm trying to play really, really cool on that one. Don't tell
anyone. It's just between us. Just between us. Appreciate it. Your confidence is massively
appreciated. On that note, thank you very much for listening. I really hope you have
a good week and I will speak to you again soon. Bye bye.