Tag: spoony

Lemtrada: Round 2 Day 2

So yesterday was Round 2, Day 2 (aka R2D2)

Woke up after a good night’s sleep and made myself feel a bit more human with a quick shower after breakfast. Feeling a lot better this morning, with the headache finally subsiding and feeling a lot cooler.

Got off to a good start, being hooked up nice and early by 10 o clock.

Infusion mostly all went without a hitch – just had a little doze when I was having the saline flush at the end but woke up back in sweat mode and the rash was starting to make a bit of an appearance. A dose of piriton later and that seems to have subsided but I still feel damn itchy!

So for the most part, it was an uneventful day. Kat (my person that keeps it real does my nails and gives me all the offensive jokes) came to visit me with supplies. Because quite frankly this hospital food ain’t cutting it, as a you can see below…

But Kat the hero arrived with pringles and lindor which made it all better!

So really not much to report apart from I’ve managed to watch an entire season of Friends and finish a book that I’ve been taking ages to get through.

In summary, day 2 went as well as it could do and we’ll keep on powering on for my last day on Wednesday!

Lemtrada: Round 2 Day 1

Well yesterday, I was admitted to Salford Royal for day one of the second round of Lemtrada.

Once I’d managed to get on the ward which is a different one to last year and like Fort Knox, I was showed to my bed. Unlike last year, I’m on a general neurology ward, with a lot of long term patients. Dave was asked to leave until visiting hours at 2pm as it’s an all female ward and at that time of morning people are just getting up and being cleaned etc. So I was taken aback slightly as I thought I knew what to expect but that wasn’t meant to be!

If you’ve followed my whole Lemtrada journey so far, you may remember that last year I had no end of problems with my blood tests and cannula. My veins were pretty deep, the first attempt blew and I had a massive blood bruise on my arm, the first one that actually made it in wasn’t flushing properly. When my blood’s were taken the haemolised (clot) before they got to the lab for analysis so I needed more taken and I never actually ended up getting hooked up until about 5 ish.

Yesterday was far more successful. Alex was the man and got my cannula in first attempt and it’s in a really good, non-intrusive place too. It didn’t particularly hurt either so hopefully that fear is over!

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Waiting for lunch I had a catch-up on Sunday night’s Love Island and did my old favourite habit of binge watching Friends, despite the fact I have loads of other stuff I need to watch!

After lunch I finally got hooked up at 2 ish. Dave re-visited and appeared with salt and vinegar pringles and chocolate, because this, is what lunch was:

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Yes, you are looking at mash, carrots and a plain omlette. The veggie options here don’t leave much to be desired to say the VERY least. It went down, but only because I was so damn hungry!

The first part of the infusion was the steroids. I immediately reacted to this with a hint of a rash appearing along with a tight chest. That awful bitter taste like cheap bad tonic (the 39p stuff in plastic bottles!) re-appeared as if on cue within 10 minutes. Kat is a rockstar though and had bought me A LOT of mint tic tacs to take the edge off. Combined with the pringles it wasn’t so bad.

Like last year, I’m downing water like it’s going out of fashion, but my bladder fully behaved itself and my toilet trip count was down from last year’s 157 on day one to about 10 this year!

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Once you get put onto the Lemtrada infusion they observe you like crazy to start off. For the first two hours they check your temperature, heart rate and blood pressure every 30 minutes. Then you have one an hour later, one two hours later and final one four hours later. Because of the time that my infusions started, my last observation was a late one at 22.45, which I was pretty incoherent for as I was so damn tired!

During my infusion I felt awful. Achey hips, blinding head ache, so so hot (unberably so) and just wanted to sleep. At best you can only doze as you’re constantly being checked on and you’d be surprised just how much is going on around you.

Dinner time came before my final infusion had finished…Dave was highly amused by “orange juice” starter. Can’t understand why. It was a massive treat after drinking so much water! And now ladies and gentleman, I present to you my main course…

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Here, you are looking at saute potatoes, green peas and a cheesy pasty. Which doesn’t sound too bad, albeit a bit yellow. But the pasty wasn’t Carr’s or Galloway’s and quite frankly did not cut the mustard for this plastic Northerner!

Infusion finally finished about 8.30 and the relief to be detached from Bleepy McBleeperson was huge. A couple of hours after, I finally cooled down, my headache alleviated and I managed to have a snooze. I obviously woke up in time for Love Island and my favourite meal of the hospital day – TEA AND TOAST!!!

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Final observations for the day all turned out good (apart from my blood sugar, but I’m pretty sure that was the fault of the orange juice and tic tacs!)

My lovely Reiki friends sent me some healing throughout the day which I’m so so grateful for, and I finished off my day by “reiki-ing”myself to sleep.

I had a pretty good night and have woken up feeling pretty good this morning.

On we go!

A week in the life of an MSer – Tuesday

6.50 – Wake up
Really don’t want to get up today! I knew I’d pay for last night’s outing but I’m off work tomorrow so that’ll get me through the day! I do my usual body scan to see what’s hurting and what’s not. There’s a little twinge in my ankle but I think after I’ve walked about a bit it should be ok!

7.45 – Arrive at work
I’m on my own for most of today, so hopefully I’ll be reasonably busy to keep me occupied and symptoms at bay!

10.30 – Ankle
This flipping ankle of mine has flared up again. Oddly, it’s actually better in shoes with a small wedge, but I’m in flat shoes today.

1.00pm – Dinner
I have a flick through Facebook on dinner. When I first got diagnosed with MS I joined loads of groups then proceeded to leave them all. I’ve rejoined one called MS-UK though and it’s really good. It’s a great place to check in about random symptoms and knowing if that’s MS or not. Today I’ve learned that my having a constant need to itch it totally related to MS!

6.00pm – Out of Office
That’s me done until Thursday now, so out of office is on and I switch off the alarms on my phone at the same time, otherwise I’ll be getting woken up dead early.

6.30pm – Home
I’m knackered and I strongly debate getting a take away. I really cannot be bothered to cook. I end up making a one pan rice thing though. There’s enough for three days too so I won’t have to worry about cooking for a couple of days.

7pm – Mail
I’ve come home to not one letter from the hospital today but five! The first one is to cancel my next nurse appointment, the second is to give me my blood forms for my next blood test, another two are more appointments and the last is from my consultant summarising my annual check up last week. All was well and no major concerns. My 25 metre walk took six seconds longer but I don’t think that’s a concern. Last year I tried really hard feeling like I had something to prove so I probably almost sprinted! He’s also recommended I increase my Vitamin D to 5000iu a day. To put that in a bit of perspective, the High Dosage off the shelf Vitamin D tablets are about 1000iu.

8.30pm – Bath
The weather has been cold and horrible today. When I get that cold, I struggle to warm up and that’s when the twinges and cramps in my legs start. The reality is, I’m pretty lucky – I can move about like normal (with the occasional hobble) and apart from my ankle, the worst it is is discomfort – not real debilitating pain.

10pm – After Life
In bed and finishing After Life – the new Ricky Gervais series on Netflix. Definitely watch it! It’s brilliant. Whilst watching, I give my legs some Reiki in the hope it’ll ease some of the cramping and restlessness.

11pm – Lights out
Time to go to sleep. Today’s not been a bad day in terms of fatigue – just slight dull aches and discomfort in my body.

A week in the life of an MSer – Monday

As March is MS awareness month, I thought I’d write a series on a week in the life of an MSer. I’ll write everyday but I might not get them posted everyday but I’ll do my best!

Enjoy!

6.40am Wake Up
Although I feel groggy, there’s no aches this morning which is a relief as my ankle has been giving me quite a bit of hassle over the last few weeks.

8.02am – Arrive at work
Get into work and log on. Catch up with a couple of colleagues about how my weekend was. We just slept a lot this weekend which was much needed!

9.30am – Toilet Trip
Luckily I’m like clockwork in the toilet department. Because of certain nerves that are damaged, I don’t usually realise I need to go for a number two until it’s VERY short notice 🙈

11am – I need something to do
I’ve run out of stuff to do. And this is when my fatigue really sets in. Even though I’ve slept all weekend I’m feeling tired. Fatigue always gets worse when I haven’t got stuff to distract me from it.

Midday – Found stuff to do
I’ve managed to find something to keep me occupied and I’m feeling better for it. It’s a bit early for dinner though. I work longer days so although colleagues are going for lunch, I’ll probably leave it another hour or so

1pm – Lunch
I take my lunch on my own – the time on my own helps me recharge my batteries. I tend to switch off with a book for half an hour. I never used to take my dinner and I was really struggling with fatigue. So I’m now trying to behave myself and actually take my dinner break!

4.30pm – Final Stretch
I always used to have finished work by now, but I’ve changed my shift pattern this year. I now work four longer days with a Wednesday off. It’s really working for me, having that rest in the middle

6pm – Finished!
Today has been a good day but it’s not done yet. This evening I’m heading over to an Essential Oil and Chakra course. I’ll grab food on the go.

9.30pm – Finally home
It’s been a really long day so I’m straight in my pyjamas with my feet up catching up on MasterChef! I’m starting to feel the tingling a bit more prominent in my feet and have a bit of restless legs. This is totally normal when I’ve been really busy all day. No pain though. I’ll also take 4000iu of Vitamin D.

10.40pm – Sleep meditation
My “sunrise/sunset” alarm clock goes off at 10.45pm so it’s time for a quick 5 minute meditation which I can guarantee will send me to sleep!

“But you don’t look sick.”

I read an article earlier today which raised the point of being asked to give up a priority seat on the train. It stirred something in me and I felt the need to share my take on this story. 

Not long after I was diagnosed, I was on the tram in Nottingham during rush hour. I was knackered and my balance isn’t the greatest – especially on the tram! I also struggle with sensory overload and I’ve found that crowds, like when you’re squashed in like sardines, really unsettling. I’ve come close to experiencing panic attacks in those environments. So on this day, I chose to sit down in the only available seat. A priority one, which we all know are for disabled people, pregnant women or children. If we are sat in one, we know we should move for someone that gets on that needs that seat more than us. 

I really needed that seat that day. But someone got on with crutches and a broken leg. So I immediately got up and let them sit down. But the question is, should I have? But then how do other people react to that if I don’t? People certainly look at you with a certain amount of judgement. 

Recently it was brought to my attention that someone had questioned the fact that I park on site at work but I can also drag myself to the gym. Which in fairness I haven’t done for a while as I’m struggling with fatigue. Again, it’s that same judgement as on the tram. At work, we’re only allowed to park on site permanently if we are working a late shift, or if we are a blue badge holder. The alternative is that we park a short walk away on the Bolton Wanderers stadium car park. It’s roughly a 7 – 10 minute walk. No, I’m not disabled enough for a blue badge and I wouldn’t want to be disabled enough for one. I wouldn’t wish that upon myself or anyone. But what I can say, is I wouldn’t in a month of Sunday’s park that far away from my destination anywhere else. It hurts me to walk continuously for anything more than 5 minutes. The pain varies. Some days it’s like my calves are on fire, on other days my right ankle is really tight and causing a lot of pain. If it’s not that, I’m just bloody shattered and it’s a walk that I just don’t need. My legs feel like they’re being dragged through treacle.

But back to the gym. It’s not like I’m running on the treadmill. In fact I barely go on the treadmill. If I am in the gym, I’m generally lifting weights, in an attempt to keep my strength up. As it tends to be static, it doesn’t cause the same pain as walking can. And if I’m having a bad leg day, I just work the top half of my body. If I’m tired, I just don’t go to the gym but might do some yoga at home. The bottom line is, if you don’t use your limbs, you might just lose them.

The point is, when you have an invisible illness you’re constantly being judged. Yet it feels as though no-one takes the time to understand. Choosing to remain positive about your condition can be a poisoned chalice too. Because if I’m smiling, I surely can’t be struggling, can I? Yes. Yes I can. 

Actually, “how can you go to the gym, but need to park on site?” is an absolutely fair question. Without being in my shoes, I wouldn’t expect you to understand. Same as the priority seating on public transport. The message to take from this blog, is if you have a judgement about someone, seek to understand. And that’s whether it’s about an invisible illness or otherwise. 

Going Strong

Although I go for appointments every month I only see Danny once every three, and today was my day to see him. The last couple of times I’ve been to see him I’ve been feeling pretty fed up, but today it was nice to be able to go in with a smile on my face. 

I vowed not to get too hung up on my lymphocytes (white blood cell count) because it’s normal for it to fluctuate month on month. There are also theories about the slower it building up, the more effective the treatment. I didn’t want to get obsessive about that and wanted to do my best to remain calm and to just let Danny let me know if there was anything to worry about. I did however give in today. After a bit of a cold that I recovered better from than the rest of the family over Christmas, I was a little concerned and it made me want to check in.

My white blood cell count is at 0.6. For the average person, that’s rubbish, but for me, that’s good. The idea is that they get back up to 1 (which is the low end of a normal person) in time for the second round of treatment this year. So six months on and I’m just over halfway there which is a good sign. I’m glad I gave in and asked!

I’m feeling good so far this year I don’t tend to prescribe to the whole “this is my year” vibe, but I actually feel like this year could be. Who knew?! Certain aspects of my life feel a little odd at the moment but they’re definitely not dulling my sparkle, which is all I can ask. All in all, there’s no January blues to be seen here, and I’m feeling really uplifted.

I’ve started my new shifts at work now too. Today’s my second Wednesday off since going on them but it’s way too difficult to tell if they’re working for me yet. Surprisingly though, working until 6 is not as grim as first anticipated. Last Thursday and Friday it would be fair to say that I was just as bloody knackered as usual, but after 18 days off over Christmas it’s no real surprise. So I’m not calling it a failure yet!

For anyone who isn’t a friend of mine on Facebook, you might not know that I have been studying an HR qualification – Advanced Employment Law. The assignment was due around about the time that I went blind in my left eye, so I ended up deferring it. That was 18 months ago. The CIPD (who I studied with) have been great and continued to let me defer it, but in October I decided that after roughly 15 months, I needed to just knuckle down and get it done. I found out on Friday that I’d passed it which I’m over the moon about. It’s a stress off the list and it’s another string to add to the bow. Prior to being diagnosed I was really keen to pursue a career in HR case management. It’s still not a complete write off, but I guess my desire to further and develop my career is not a priority at the moment. I’m really just happy doing a good job in my current role in Learning and Development. MS had made me realise that a career isn’t the be all and end all. And at only 32, there’s nothing stopping me picking it back up again when I feel called to do so. 

I feel as though I’ve spent my life developing myself academically, and right now I’m enjoying developing myself in terms of who I am and how I am. I’m enjoying pursuing mindfulness and meditation. Exploring my spirituality. On Saturday, I’m doing my Second Degree Reiki which will make me a Reiki Practitioner and that’s really exciting too.

When people ask me how I am, I often say plodding along. But right now, it’s fair to say I’m skipping! 

MS: Business as Usual

Last time I wrote about MS, I talked about how I was working to be less defined by having it, and the response I got from people was overwhelming, as always. Although I don’t want to have it as the main “thing” that I always talk about, I also recognise it’s why I started this blog and many followers of it are here to get some insight into life with MS, so I thought I’d post an update on things that have been happening in life and how MS has impacted it.

About the title of my blog. I cannot remember for the life of me who it was so I can’t give them the credit they deserve, but they summed up it up both perfectly and hilariously that MS is just BAU*. And it really is. It’s not the new thing. It’s not the main topic of conversation. It’s just BAU.

We’re going through a restructure at work at the moment which has included a lot of people taking voluntary redundancy. I’ve chosen to stay. A huge part of this is that my current employer looks after me so well. Add to that the (admittedly simple) adjustments I need along with a blood test slap bang in the middle of a Tuesday every four weeks for the foreseeable future. Yet I’m not made to feel like a pain in the backside. I wrote a post not so long back about my fear if I ever had to change jobs. I get that any employer would have to make those adjustments by law, but I’d hate to be made to feel that it was done begrudgingly. The other key reason is that I actually love my job. So right now, I see little point in rocking a boat that doesn’t need to be. Granted, it’s an uncertain time. We’ll inevitably have to change the way that we work but how that shapes up remains to be seen.

Whether how I’m currently feeling is being exacerbated by the current situation at work I have no idea, but my fatigue seems to be through the roof at the moment and it’s the one symptom I find hardest to just ignore. Oddly enough, as long as I’ve got something to keep my occupied, I’m ok. As soon as things slow down though, I need some matchsticks to keep my eyes open! This was apparent when I had to take myself off home an hour early on Friday. I’d done everything that I needed to do and I just needed to get home to bed. I’d thought that perhaps I’d out slept my fatigue last Monday. I felt great and smashed the greatest gym workout in a long time! I was back in my happy place with an Olympic bar. On days where my ankle hasn’t been feeling so bad, I’ve even managed to run a bit. I’d crashed again by Tuesday though and I’m just learning to not feel bad about not being so consistent with the gym these days.

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Happy Place!

I saw Danny for my monthly bloods last week. It’s the first time I’ve seen him since the last day of Lemtrada and I was feeling pretty pathetic in a hospital bed. It was nice to see him and have a chat. He was really reassuring and said that I’m doing good. I probably needed to hear that. I have no idea what my lymphocytes (white blood cells) are at though! Many people who go through Lemtrada can get a bit obsessive with it, but I’ve chosen not to get hung up on the numbers. They mean naff all to me anyway since I’m not a medical practitioner and I just trust Danny to let me know if there’s anything amiss. It’s easier to just forget about it and let the people that look after me worry about it!

In other news, I was “supposed” to be doing jury service this week and next. Those that know me and my background will understand why this was so exciting for me. I know you’re not supposed to talk about jury service, however on the basis that the defendant ended up acquitted before we’d even set foot in a court room coupled with the fact that there were no further trials for us, I think I’m pretty safe. In amongst the disappointment I’ve got to admit that there was a shred of relief. I mean – bowel urgency in a court room ain’t gonna be a good look! Plus, with no sign of my fatigue going anywhere, I was worrying about how well I would be able to concentrate on the case. In fairness, I was honest with the woman that looks after the jury early on (she’s got a proper title but I can’t remember it for the life of me!) and she was amazing about how we could manage it. So if you have MS and get called up for jury service, my advice would be to be open and honest. They want to support you as much as possible.

In more positive stuff, I am absolutely LOVING Reiki. I’m going to talk about it at length in a future blog post because it deserves lots of words and attention spent on it! I’ve also finally had the chance to write my blogs for MS-UK, who asked me to guest blog for them about three months ago. In an attempt to redeem myself, I sent them a couple of posts that they could publish. They’re edited down versions of blogs I’ve posted on here, as they only have a 400 word limit. As soon as they’ve gone live, I’ll link them up here.

All in all, I feel like I’m coming to terms with my MS more and more everyday. On the days when I’m not overcome with fatigue, I feel as good as I get. And I can’t complain about that. It’s still shit. It’ll never stop being shit, but I’m starting to notice the gifts it has given me. Which is a story for another time…

 

*If you haven’t got the foggiest what I’m on about, BAU stands for “Business as Usual” and it’s a term used in the corporate working world for you normal, everyday work. There’s nothing special, exciting or exceptional about it. It’s just your average day.