Well, hasn’t it been a while? I’ve just not felt called to write for quite some time. Throughout March, which was MS awareness month, I shared almost daily stories on my Instagram (@gimmehopejoanna) where I talked life with MS. I shared my story of diagnosis, … Continue reading The Perching Stool
NEDA. Sounds like nada. And ‘nada’ is the exact amount of damage MS has done since I’ve started Lemtrada.
NEDA means ‘no evidence of disease activity’ which is the best result I could get from an MRI scan. I mean I could be told that my lesions are shrinking but since there’s no cure for MS I’m pretty cynical about that – or rather, I don’t believe it actually means anything.
Anyway, it was news I needed to hear and helped me put my positive pants back on. I’ve been feeling a little disillusioned about my choice to have Lemtrada recently. I’ve not relapsed since being diagnosed, but for some reason I feel worse which just wasn’t making sense. And when I say worse, I’ve found I’m having to make new adjustments. When cooking, I’ve found I’ve needed to sit at the kitchen table to do the chopping and prep of a meal because standing up for a long time is getting hard! (Note to self – buy a perching stool). When going into town, I’m having to find a bench to sit on and take a break whilst Dave pops into a shop. Things are just feeling a bit tougher.
Talking to my nurse put it in perspective though. He rightly pointed out that I’m still only 7 months post recovery of my second round of Lemtrada. It’s winter which makes all of us feel rubbish and it’s really hard to recover from the Christmas period with MS. I moved house. I’m still adjusting and recovering from life being crazy!
So the good news is that I might not be getting better, but I’m certainly not getting any worse. Since I’ve had my treatment people always ask “has it worked?”
If by “worked” people mean that I’m not getting worse, then I can finally now confidently say that yes, it has.
If this is as bad as I’m going to feel then that’s a small price to pay to stop things getting worse. And I’m delighted with this news.
We’ve all been there. Whilst thinking we’re on death’s door from all the sambucca shots last night we’ve sworn we will NEVER drink again. But within a few days it’s forgotten and we’re making next weekends plans.
Granted as we settle down, those night’s out are probably less frequent, but the bottom line is that the majority of us are still willing to have a hangover to end all hangovers in exchange for an awesome night out.
And why wouldn’t we? I think they call that living!
So how is this relevant to MS?
Well, I have to make decisions similar to this everyday. Earlier today, I was explaining to a friend how you often feel that when you make a decision to walk the dog, go to the gym, dance around your kitchen or indeed go out partying or drinking, people are judging whether you really are struggling or not. Because surely if you can do that, you’re fine, aren’t you? Right?
It’s a big decision, whether you do those things or not. Going to the gym is something you might do, not because it doesn’t cause you pain and is easy, but because you know that if you don’t, your disability will get a hell of a lot worse.
You might decide to walk the dog because the dog needs to be walked. It’s unfair not to.
You might dance around your kitchen because you used to love dancing and your condition has robbed you of being able to do it for more than five minutes anywhere else. And you might still go out because you want to retain as much normality as possible, you’re still human and enjoy socialising and if you don’t, chronic illness can be really bloody lonely.
You make those judgements for your own sanity and because you’re not going to let your condition rob you of living. You decide to do it because even though you know you might pay for it for days afterwards, what it will do for your soul, far outweighs the pain and fatigue that will come after it. It’s a conscious choice to have fun knowing full well what the consequences are.
Not unlike a hangover 😉
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.
It’s definitely not been easy this time around.
“Have Lemtrada” they said.
“It’ll make everything better!” they said.
Right now, I think “they’re” big fat liars.
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.
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!
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.