I’m now almost a week past my last infusion and have had some time to reflect on what I wish somebody had told me before going through it. So for anybody who’s thinking about going for Lemtrada, or is anxiously waiting to begin (or just … Continue reading 10 Tips for going through Lemtrada treatment
A little while back, I said I’d talk about what “spoon theory” or the term “spoonies” means. I’m not keen on the label, but as a theory it goes some way to explaining how people with chronic illnesses that suffer fatigue as a result, can manage their energy levels.
It felt significant to do this today, as it’s taken me twice as long as usual to get ready to go out for a drive with Dave. I’ve been desperate to get out, but actually now I’m ready I just want to go back to sleep!
So spoon theory – imagine that you have 12 spoons, each one representing an equal portion of your energy levels for that day. BUT, if you didn’t sleep well last night, you probably only start with 11 spoons. If you’re unwell or have a cold, you’ve probably only got 8 to start. I’m quite possibly on even less at the moment as I’m “immunosuppressed”.
Every activity in a day uses a spoon, or part of, and in people who suffer with chronic illness related fatigue, more spoons are used to complete the activities. On top of that, it takes longer to replenish the spoons when they run out.
So as an example, on a bad day prior to Lemtrada treatment, I would probably use two or three “spoons” just dragging myself out of bed, stepping in the shower and getting dressed and ready for the day. At the moment, that’s taking up pretty much all of my spoons, but that’s ok – it’s a short term thing.
Sometimes you might “overspend” your spoons for the day. So even with a really good night sleep, you’ll end up with fewer spoons the next day. This might happen if you really don’t want to break an appointment or plan with a friend, or you go on a birthday celebration. You might be short on spoons for a day or two after. If you suffer with fatigue, you’ll know that this will happen, but living your life how you want to, and not how your illness tries to make you live it is usually worth it!
This theory is completely relevant, not just to MSers, but any fatigue related to a chronic illness. It’s so important to remember that just because people look ok, it doesn’t mean that they’re not trying to conserve their spoons!
Yesterday morning, in amongst the euphoria of going home, I crashed. Really crashed. I couldn’t be bothered to put my bra on. Every day I’ve had a routine of having a shower, doing my hair and putting my face on, in the interests of feeling a little more human.
Yesterday, I couldn’t care less about feeling human though. I was bloody knackered and just wanted to sleep. I can only liken it to feeling like coming down with the flu. And I don’t just mean a cold. I mean full blown, can’t drag your body out of bed, flu.
I mean, what are these MS warriors people speak of? Cause there ain’t one here! I felt pathetic!
I thought I’d got away with the rash too but I woke up looking like I had hives. Eurax cream, whilst messy was an absolute god send though as it really eased the itching. My nurse had other ideas though and I ended up with the two doses of intravenous piriton, one either side of the Lemtrada infusion.
I kept dozing in my infusion yesterday, I was definitely feeling the effects of not having steroids on Thursday!
Eventually, by 3.30 I was allowed home. Walking through the door at 4.15 was brilliant. I was so pleased to see Poppy and to just sink into an arm chair.
I managed about 2 slices of pizza (despite declaring all I wanted was pizza!) and then fell asleep for about 3 hours. I managed to get up for an hour and catch up on Corrie but then flaked out again at 11 and didn’t wake until about 10 this morning!
Even the little things are exhausting me today. My legs are the bit suffering most. The weakness and exhaustion I feel in them is like nothing I’ve ever experienced.
So I think the Doctor ordered lots of chilling out over the next few weeks, sleeping when I need and generally just taking it slowly.
Even though I do feel awful though, they can’t stop me smiling!
Last night I had a really restless sleep. I know, serves me right for being so cocky about Tuesday night doesn’t it! I was between breaking out in hot sweats and then going freezing all night. My breathing has been a bit shallow too which probably didn’t help either. So I ended up giving in and doing 10 minutes of so on a nebuliser. Must remember that I’m not at home suffering through this. I’m in hospital where they can help! The post nebuliser shakes are awful though. Just weakness like you’d never believe possible.
Feeling sorry for myself this morning
In other news, I no longer need my blood sugar levels testing as I’m no longer on the steroids so that nice alarm clock has gone.
I woke up with THE RASH this morning but that calmed down with my anti-histamines. It’s resurfaced again but I’m going for the “resist the scratch” method of medicating and so far so good.
Nebuliser and a real flush!
On top of all of that I was feeling epically sorry for myself this morning as I learned about “steroid crash”. I couldn’t bloody stop crying could I?
Oh and we can chuck some heartburn in for good measure, yeah?
Ahahh well. We go on! One more infusion to go.
Oddly the time has been flying. I’ve had a steady flow of visitors who have all come bearing food and something to talk about other than infusions and whether I’ve opened my bowels today (no joke, they ask about this probably close to 5 times a day!)
We can only laugh+
I’m currently tucking into my favourite meal of the day! 9.30pm tea and toast (obviously accompanied by a blood pressure test and the rest of my tablets!)
Today has been a nice day. I woke up a very happy patient after successfully dropping off to sleep at 10.30 last night and only waking up at 6.15 in time for THAT alarm clock.
Kath has visited today with trashy mags, chocolate and more cordial (I’m getting through it at a ridiculous rate).
Fortunately as I needed a new cannular, she also arrived with a hand for me to crush! As it happened, the nurse on duty, Gincy, was lovely and really quite gentle.
Infusion started earlier again today – at about 1pm so we’re slowly moving forwards with it which is good as we need it nice and early for Friday so I can be discharged at a reasonable time.
After my infusion had finished I received another visitor in the form of Ste, a work colleague and friend for around 10 years. He’s just got back from his dream holiday in Sweden and Denmark so was fab to talk about that, and something other than my blood pressure!
Mostly today has been uneventful though. A little bit of chest tightness but not bad enough fo a nebuliser and I can report that my bladder is stronger with only about 47 trips to the bathroom today!
Tomorrow I stop the steroids. It will be nice for the taste to go, but with the lack of steroids comes a horrendous whole body rash in the vast majority of people!
Day 2 started for me at 4.53 am. Or at least that’s when I chose to wake up!
Which I can’t really grumble about since I dropped off at about 11 ish. In a strange bed, sweating like mad with Christ knows what pumping through my system, 6 hours is a good enough achievement for me!
I woke up at around 2 am with my cannulated arm in some serious pain, but just think it was the position of it. I hadn’t kept my arm particularly straight so bending it, right at the point of cannulation wasn’t doing me any favours. A change of its resting place seemed to sort it right out though.
I saw the early rise an opportunity to take advantage of the time difference and spent some time texting my sister who’s in New Zealand. Before I knew it, it was 6.15 and I was ready to drop off again. Unfortunately the night nurse had other ideas and appeared at my bed to give me the greatest wake up call of all time. A blood sugar test which basically feels like you’ve stapled your finger to the table! Never mind. Alarm clocks are for losers anyway.
I text Dave at roughly 9 am after I’d showered, got dressed and eaten breakfast. I didn’t get a response but he did walk through the door at 10am which was a nice surprise.
The rest of the day has passed in a bit of a boring blur to be honest. My second lot of tablets made my blood pressure drop so I went really faint. I eventually started infusion at 2pm. The delay happened as I needed to wait 22 hours before I could go again.
I had a face time with mum and dad a little earlier on which was nice. (Mum was showing off her desperado, whilst I was still ploughing through my mammoth effort of water. I’ve got through almost 4 litres today plus a couple of glasses of orange juice and a coffee. On the plus side, toilet trips are at about 87 now so that’s a definite improvement!)
I’m feeling mostly good though except tiredness has hit but can’t drop off yet as I still have another couple of hours of observations to go. My temperature has just started to spike in the last half hour too so they’re keeping a close eye on me.
All in all, a boring day. But as my mum always says, “boring’s good!”
Today I was admitted to Salford Royal to begin Lemtrada treatment. For those that don’t know what Lemtrada is, or a quick reminder for others, it’s probably the best treatment available for people with relapsing remitting MS. It’s an infusion based treatment that you take … Continue reading Goodbye immune system, it’s been good knowing you!