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.
The days you wake up, do a quick body scan and realise that you’re ‘you on your best day,” are truly joyous. The trouble is, it’s a precarious balance. Any minute it could come crashing down.
On your “best day” it’s not abnormal to get giddy about how much you can do and then push your luck just that bit too far. Like I did today. I usually do use my day off in the week to rest and recover but today ended up being busier than I like it to be. I had a couple of places I needed to visit as well as getting my bloods done. The urgency is in part down to being pretty busy this upcoming weekend, and partly knowing I’ll be in hospital 12 days from now. But now I’m paying for it. It’s 6.30 on a Wednesday night and I’m shattered!
I’ve been thinking a lot lately about the fact that I don’t think I’ve had any relapses since I’ve been diagnosed with MS. At least not a debilitating one. Yet I feel like I’ve been feeling progressively worse, physically. As my white blood cells still aren’t quite up to the bottom end of normal, I’ve been assured by a nurse that I can’t possible be having a relapse. So why do I feel so damn terrible?
It’s the aching more than anything. It just doesn’t seem to take a lot to make me feel like I’ve done a couple of rounds with Mike Tyson. And when I say “not a lot” in healthy person terms, it really is nothing. And I don’t know why. Sometimes I wonder if the brain really is so amazing that I DID feel this terrible prior to diagnosis, but in the absence of an explanation, or indeed in fear of it, I just suppressed anything I couldn’t explain.
It seems plausible that perhaps every way that I’m feeling terrible at the moment is something that I’ve experienced before, back when I was blissfully unaware that I was living with MS. But I found a different excuse that was temporary after it vanished. The reason everything is flaring up is that everyday my body is not only existing but it’s fighting off the symptoms and it’s fighting to build my immune system back up. That’s gotta be exhausting. Right?
I just feel like since Lemtrada, I haven’t been quite right. It’s not bad enough to put me off going for my second round. I keep trying to trust the process. That it’s a two year treatment that I’m only halfway through. It goes some way to appease me but then there’s this little niggling thought that there’s something more sinister going on.
I feel so confused that I’ve started to track my symptoms through an app called SymTrac. This doesn’t feel like something I want to use long term though. It’s making me think constantly about what pain I am and am not in. I’m all too aware of how I feel right now, and that’s not good for me.
Any other Lemmies out there with words for advice, reassurance or comfort? Or anyone in the know for that matter.
Many followers to this blog may know that on 11th June it will be a year since I had the first round of Lemtrada. That time has flown. I honestly can’t believe it!
That means I must be due to head in for round two. And I can confirm that on Friday I got the call to tell me I’m due for my second round on 17th June. Nothing like a good bit of notice eh 😉
So two weeks from today, I’ll be packing my bag for this year’s treatment.
A quick reminder of last year’s treatment – I went through five days of infusion based medication. Three days with steroid and two days without. The drug wiped out the part of my immune system that attacks my nerves and causes the demyelination we know as MS.
This year, it differs slightly. I’m only in for three days for the same treatment. I’m not 100% sure if I get less of the drug or if I get more per infusion but I’m sure I’ll find out!
So a short, but sweet update!
It’s a weight off the shoulders. If you’ve read this blog from whilst I was being diagnosed you’ll know I’m a planner and totally hate the unknown or a lack of plan! It’s made me completely irritable and irrational. But hopefully I can start to see past this treatment now, and onto a life where MS is at the bottom of the list of things I think about. And not at the top.
The title of this blog is slightly misleading. Because I didn’t find Reiki. It found me, as is the case for most people. See, you feel called, or drawn to Reiki.
Reiki means ‘Universal Life Energy.’ It’s a gentle, non-invasive holistic therapy which can be used to heal both physically and emotionally. If you are attuned to give Reiki, much as I joke about having ‘healing hands’ that’s not strictly true. You are simply able to act as a channel for this spiritual, universal energy to reach the recipient. Reiki is an intelligent energy, so whilst intentions can be set for how it works, it will always work for the highest good. In other words, it will help you in whatever way you need. I find it really tough to explain actually, and if you feel open to it, the only way to “get it” is to experience it.
My journey with Reiki started in July last year when I saw an event on Facebook for a First Degree Reiki attunement at the MS Therapy Centre. For unknown reasons, I felt that I just had to go on this course. I’d never even had a Reiki therapy at that point.
The course was booked in for the 15th September and before then I did finally experience Reiki and I just knew I was on the right path. My first therapy was about a week before I was due to go back into work after I’d been on long term sick after Lemtrada. Anxious is not a word I would use to describe myself. I’m pretty chilled out. But I’d started to get really worked up about going back to work. I had the most horrendous knot in my stomach. Reiki definitely helped me to relieve that. I had a “healing crisis” after my first session. This is normal in lots of people as “bad energy” gets unblocked from your system and can present itself in lots of different ways. For me it was uncontrollable sobbing and a splitting headache the day after! It didn’t put me off though and I had a further treatment before attending the course.
The First Degree attunement was easily the most spiritual experiences of my life. First degree has a heavy focus on self-healing, but also enables you to heal friends and family, pets and objects. So basically anything! Even food. You’re not going to make it organic or anything, but you can dissipate any negative energy that might be in it. Following on from the day long course, I had to practice Reiki everyday for 21 days and keep a journal of my experiences. This was the point at which I became a Reiki cynic. How on earth was I able to do this undefinable, sacred, pretty much magic, healing thing? I was totally open to receiving it from Nicola (my Reiki master), but I just couldn’t get my head around the fact that I was able to do this “thing” that I was in awe of. Receiving it is the most incredible gift and I really struggled to believe that I could give it.
In spite of my doubts, I persisted because they say that the more you use Reiki, the stronger your ability to attune to the energy becomes And your confidence grows too. The first “a-ha” moment came for me six days after my attunement when I gave Poppy her first Reiki therapy. I had read a lot about Reiki for dogs and how you can give it to them. And she was exactly as they described. She remained so calm, and occasionally moved to direct me where she wanted my hands to go. Dogs are far more intuitive than us and just “know”. When she had had enough Reiki, which was about 40 minutes worth, she got up, licked me on the nose and walked off. Just like they described in what I had read. I couldn’t believe it! Maybe, just maybe…
By Day 16, when “switching on” Reiki, I had started to feel a shift of energy in my hands. I was starting to observe some really positive changes in my life. I was losing some obsessive habits that aren’t good for me. At the end of the 21 days, I received my certificate and continued to practice Reiki on myself whenever I felt called to do so. I purchased a massage table so that I could be comfortable whilst giving it to friends and family.
I eventually plucked up the courage to give the girls a therapy and I was met with an overwhelmingly positive response, and for the first time, I gave in to intuition whilst giving Reiki. It was a real confidence boost! After that, I continued to give the occasional therapy to people who wanted one but gave it mostly to myself and Poppy (when she let me!)
On Saturday, I had my second degree attunement. This is so exciting, because it means that I can call myself a Reiki Practitioner should I choose to. That means, I can have a business, although this isn’t something that I feel called to do right now. In addition, I can send Reiki over distance and to the past and future. In order to get my certificate, I need to do 30 of these types of therapies. At least 15 of these should be over distance. In addition I need to do four hands on therapies and receive four.
I am loving this journey so so much and I would say without a shadow of a doubt, this is the greatest thing I’ve ever discovered. Even better than sliced bread!