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.
My lovely Mum and Dad have been up this weekend to see Dave and I in our new home. It’s been a gorgeous weekend and I was devastated to see them go on Monday. I’ve been doing this for ten years nearly and it never gets easier.
The first thing to do on their visit, was to introduce my boxer, Poppy, to mum and dad’s Schnoodle, Reg. We did this by introducing them on the neutral territory of the water park a couple of minutes walk down the road from me. There’s a couple of big reservoirs you can walk round. It’s really lovely and lots of people walk their pooch there.
Anyway, I digress. We took them on a pretty big walk around them (which I rarely do – it tends to be Dave’s job). Mum and Dad both commented how surprised they were at how far I managed to walk. Roughly a mile. I think they were just as surprised when I told them that pretty much every bone and muscle in the lower half of my body was in pain. But there’s nothing you can do. You’ve just got to get on with it.
That’s the thing about invisible illness. The only thing that isn’t invisible sometimes is the brave face you put on. I only ever admit how I’m feeling when someone close to me asks me like they actually want to know. Anyone else will simply get the stock “yeah I’m fine” response.
It’s a difficult balance to strike. You don’t want to go through life being miserable about the pain you’re going through and constantly going on about it. You don’t want to inflict your troubles on everyone else. They’re your problems, not everyone else’s, after all. But you also want people to see and understand that sometimes you need a really simple adjustment to make your life easier. Sometimes that adjustment is as simple as an acknowledgement that you’re finding life a bit hard.
Because it’s a tricky one to get right, many MSers end up on the side of permanently pretending that everything is “just fine” but having this internal struggle and frustration that “nobody gets that things are a bit harder for me”. Then they still won’t speak up and we’re all just too damn proud to ask for help. Or we genuinely believe we don’t need it.
As I’ve already said, as a general rule, Dave does the Poppy walking because I find it so hard. But as he was at work, I really didn’t have much choice on Friday. And let’s just say I’m still paying for it now.
This isn’t a tale of “woe is me”. This is a tale of a girl that was so bloody desperate for the temperature to cool down because she was sweating constantly, she’d forgotten how much pain the cold caused her. It’s a tale of a girl who needs to learn to be a bit more honest when she’s feeling a bit shit.
It’s not unbearable pain – I can keep going through it on the odd occasion there’s no alternative. But it really is enough to get me down. And I’m starting to feel a bit fed up of it all.
But for now, I’m practicing gratitude where I can. It does tend to distract from the pain slightly, as does writing this blog. I’m throwing myself into reading excessively. I’m napping when I need to and generally trying to slow down a little because it’s been a whirlwind six weeks.
It’s been ages since I’ve written and I guess I just haven’t been feeling all that inspired to write. Having said that, I’ve got lots of ideas following my recent, amazing trip to Bucharest for the MS Sessions (more on that in a blog in the VERY near future).
But today, I want to talk about the mind/body link. Because today, mine are totally not on the same page, and haven’t been for the last month or so.
Some of you reading this will know that Dave and I completed on our first home just over three weeks ago. And it’s amazing. I truly, could not be happier.* But my word, isn’t moving exhausting? There’s been a never ending stream of flat pack, boxes, admin, decorating and just “stuff to do”. Throw a trip to Bucharest in the middle of it all and you end up with one exhausted MSer.
I try to slow down, but my brain is constantly thinking of the (what seems like) 1,001 things that I need to do. Add to that, I’ve been crazy busy at work this week and I’m just feeling a little overwhelmed. I’m not living in the present – I’m constantly looking at the next task.
Let’s back track a second.
The day after I got back from Bucharest, Dave and I headed out to do a food shop. And for the first time I felt like my disability wasn’t invisible anymore. I was walking along with stiff legs. My knees just wouldn’t bend. My balance was way off. I’d gotten out of bed that morning and had fallen straight back in.
My first thought was “shit, am I having a relapse?” A couple of weeks on and I’m almost certain that I’m not. I’m just bloody exhausted. BUT I WON’T SLOW DOWN!
I’ve got fellow MSers left, right and centre telling me to “slow the hell down” but I’m not doing it.
And now I find myself lying flat on the bed with every bone and muscle in the lower half of my body aching. All comprehension and reasoning in my brain is gone. Ask my a question and I have no idea what the answer is.
It’s my own fault. I insisted on going out and doing a food shop today. I know, I know, but Lidl don’t deliver and they’re WAY more cheaper. By the time I got home I was physically exhausted. My legs hurt, my hips hurt and my feet hurt. I wanted to cry in pain. I did for about five minutes but got in bed with Pops (my dog) and we had a nap.
The second I woke up (feeling much better), I jumped up and I’m doing all sorts of crap that really does not need to be done yet. And now I’m back in bed in pain again. I know. I’m an idiot.
The thing is, sometimes I don’t feel mentally exhausted. I have so much clarity and I feel like I can take on the world. And I’ll just keep on pushing through the pain to get the job done. I need someone to tell me to stop. Which Dave did eventually do today. After I got up and I started trying to unpack the last boxes, he walks in like “what on earth are you doing?!” and promptly tells me to go and put my feet up.
Thing is, when I don’t feel tired, it’s tough to stop me. I physically find it hard to just sit and do nothing. I get restless. I’ll keep on going until the pain cripples me and someone tells me to stop being a hero and sit down.
Really, what I need to do is learn to accept that almost everything really can wait until tomorrow. I don’t have to constantly live “getting shit done” and at 100mph. And let’s face it, the only person beating me up when it’s not getting done, is me.
*That’s a lie. I’d be happier if the used tea bags actually made their way to the bin and if he bought 3ply loo roll and not 2, but I can just about live with it 😂
I’m really scared. Scared for the future. I’m going against all my rules feeling like this. I tend to prefer to not dwell on what might happen with the progression of my MS. Because that’s just it. It only ‘might’ happen. There’s just as much a chance that everything will be ok. Which is why I see little point in wasting time worrying about it. That isn’t effective 100% of the time though. Like now for instance.
I’m not really sure what’s triggered it. I returned to work last Monday after six weeks off following my second round of Lemtrada and it was ok. As I’m on a phased return, I worked four hour days last week, today I managed five hours and tomorrow I’m going to try for six. And for the most part, since about two weeks ago I’ve been feeling considerably better than I usually do.
This weather is not helping at all though. Yesterday, I felt terrible. And all I could think about was the fact that I really needed to clean my bath. But I just didn’t have the energy. I could barely stand up for 20 seconds without feeling like I needed to sit down again. And still….”the bath needs cleaning Jo,” said that little voice in my head. All I could think about was that just for once, I’d like my whole bathroom to be clean at the same time. Not just the toilet, or not just the sink, or not just the bath.
But I left it. I just couldn’t do it.
Today. I’ve been into work and had a good day. And although I’ve had a bit of an upset tummy since I got home (this happened last year – damn immune system. It literally reacts to the slightest thing) I’ve been full of energy. To the point that I’ve done a load of washing, changed my sheets, vacuumed and guess what? Cleaned the bathroom! THE WHOLE BATHROOM! I’m sat in my bed now in an attempt to recover from that mass expenditure of energy, but I felt good whilst I was doing it, so I don’t really regret it!
Dave and I are in the process of buying our first home at the moment and it’s really stressful waiting for a completion date. But we’re having ALL the grown-up conversations in the meantime. The current debate is over having, or not having a cleaner. Because I can’t even begin to explain how knackering cleaning that damn bathroom is. And I can’t just wait for a random day where I have energy like I do today. It could be months before this happens again! And actually, even if I do have the energy levels for it, I’d rather use it on going out for a nice walk or on some other quality time with Dave and Poppy.
It’s conversations like this that are making me fear for the future. I don’t know if it’s the very real responsibility of having a mortgage and desperately trying to find an insurer that will give me a half decent quote on life insurance (*NEWSFLASH*: getting a decent quote with MS – not easy. And don’t even bother with critical illness when you’re already considered critically ill). It could equally be that I read a story about a 46 year old woman who is living in a care home with residents that are mostly in their 80’s and living with dementia*. The system has totally failed her. It’s heartbreaking. She didn’t inflict MS on herself. She didn’t chose to have it. I know that life isn’t fair, but nobody deserves to live how she is living. And it just seems to have hit me that that might become my reality and it scares the living daylights out of me.
I know that right now I’m in a little funk that’s completely normal when you have a degenerative condition such as MS. In a matter of time, whether it’s days or weeks, I’ll snap out of it and start living in the present again. But sometimes I just need to let this emotion come out, rather than bury my head in the sand. The trick is remembering to stand back up and march on.
I’m ok. I really am. On a rational level I know that this is just something I need to go through, but I also know that there’s light on the other side and it’ll be ok.
*I didn’t go looking for this story. I tend to avoid it because I know that half the time the media only tells half a story anyway and is meant to sensationalise and make us all worry and fear everything. This was posted in an MS Facebook group though and I guess curiosity got the better of me.
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!