It’s been a couple of weeks since I posted about my experience of Lemtrada Round 2 and now seemed like a good time to check in. Mostly because I’m sat in the doctors waiting room (again) with little else to do.
So last time I wrote, I ‘probably’ had cellulitis and the rash wasn’t abating. Since then I’ve had a course of penicillin which seems to have done the trick on the cellulitis.
Thing was, I was taking 25 tablets a day and quite frankly the thought of another tablet made me want to throw up. So despite the rash, I decided that just for a day I’d knock the anti-histamine and paracetamol on the head. As it turned out, the next day the rash did finally subside so I didn’t bother taking them anymore after that.
On Monday however, my itchy scalp (remember that from last year?) started, so I figured I’d just take another one of the anti-histamines that I was prescribed in hospital (chlorophenamine, which is basically piriton). Within minutes my skin flared up. I broke out in hives almost all over my body. The very same rash I’d had that I was trying to combat.
So the medication I’d been taking to beat the rash was giving it to me. Oh the irony.
Much to the amusement of many of my friends on Facebook, after a bit of googling for home remedies on Tuesday morning, I had a bath in porridge oats. It has anti-inflammatory properties and much to my surprise really helped. Once I was out I slathered myself in what was quite frankly an offensive amount of aloe vera gel and ended up spending the majority of the day sleeping.
By Wednesday, it hadn’t shifted. I popped into a local Pharmacy which suggested trying a different anti-histamine but nothing has changed. If anything it’s got worse.
Overnight has been horrendous. I’ve never sweat or itched more. It’s unbearable and I’ve now given up on waiting for it to ease on its own and am now sat waiting to see the doc.
Today has resulted in a full scale pity party. I feel terrible. I’m pissed off that I’ve got MS, I’m pissed off that I’ve had Lemtrada, I’m pissed off that I haven’t stopped feeling lousy for two weeks nearly now. I’m just pissed off.
So, since my last blog last Wednesday, what’s been going on? I was discharged from hospital by about 5pm. I felt pretty chirpy and just generally ok. Legs felt really whoozy though. If you remember, last year, I’d managed to get quite a bit of time off the ward so I’d managed to retain the use of my legs a lot more than this year.
I spent the majority of Thursday sleeping and just generally aching but for the most part I was ok. Friday was reasonably ok too – I even managed to go out for a couple of hours.
Saturday saw me at Poppy’s play date for a couple of hours, then sleeping the effort of that off all day. Same for Sunday, minus a playdate.
Sunday night, I headed back to mine and pretty much, all was about as I’d expected.
So far, my experience was mimicking what had happened last year for the most part.
But then Monday happened.
Following a terrible night sleep, I had to stay awake for my Tesco food shop to be delivered. Given the three hours sleep I’d had, this proved difficult. And the temperature really increased. When my shop did arrive, I was the hottest, sweatiest mess I’ve ever been!
The sheer effort of unloading my food shop made me want to throw up, and I found myself horizontal on the ice cold kitchen floor, desperately trying to feel cooler.
Monday night was another night with very little sleep (but that could have been because I stayed up reading a book).
Tuesday was a terrible day. I felt like I’d been hit by a bus. I barely moved all day but when I did I was seeing stars, dealing with waves of nausea and my heart rate spiking from taking three steps. I wasn’t good. I never felt this bad last year.
I was beginning to realise that perhaps I was lucky last year for Round 1 and how much it had affected me. I admitted defeat and got a taxi back to Dave’s. I couldn’t look after myself. Every effort to just made me feel worse, but I have to eat and stay hydrated.
I want to say that Wednesday was a better day. And in many ways, it was. I didn’t feel as sick or weak. But Dave spotted a patch on my arm that didn’t look like the rest of the Lemtrada rash that was slowly taking over my body. I usually like to give a visual representation but you definitely don’t need to see my rash. Think hives.
The short version is I ended up seeing a Doctor, not from my regular surgery as they close on a Wednesday afternoon (coz people don’t get sick on a Wednesday apparently). He said it looked like I had early onset of cellulitis around the site of my cannula. He prescribed me a course of penicillin to add to my already offensive list of medication.
Overnight, it definitely hasn’t got worse and it’s less red in colour now and more pink.
Today, I’ve just slept. Then woken up eaten and gone back to sleep. But I’ve got a confession. I have also had a proper wobbly today. A real “why me, why MS” angry strop. I cried my eyes out. I try and avoid doing this too often, because for me personally, it’s counter-productive, but some days putting on a so-called brave face just gets too much. And nobody would blame me for it.
I feel so weak for doing it though. I feel like I’m not living up to how people perceive that I’m coping. In life, it feels like crying is seen as weakness. But I truly believe that strength is not in your reaction, but how you recover. So it’s ok to cry and let it all out.
Or it could be the emotional rollercoaster of steroids and I had no control over it.
In short, whatever I thought I knew about going through Lemtrada has completely reversed. Last year I felt under the weather. This year I can barely move with every limb and joint aching. I have a horrendous rash, I’ve ended up with cellulitis and I can’t stop sweating.
However, if you’re reading this, waiting for Round 2 yourself, please don’t let this scare you. All this proves is that this is so different for everyone and there’s no way of predicting how this will go for you. And please remember. There’s a greater good behind all of this. It could be leading you to a day where you don’t even think about the fact that you have MS.
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!
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!
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:
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!
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…
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!!!
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.
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.
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!
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!
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.