In my opinion I've had very few side effect symptoms since the treatment stopped, for which I am really grateful.
The first weekend after treatment I slept through nearly all of both days, I was awake for roughly 6 hours each day and that was in-between cat naps! And boy did the sleep feel GOOD. In hindsight, I wish that I'd been able to sleep more in hospital as I think it would've really helped. My lem buddy Pete wore noise-cancelling headphones to ensure he could listen to music and get some good cat naps in. Jonny is now lusting after a pair of these and so am I because they seem like such a good idea when you're trying to sleep on a noisy hospital ward and your ear plugs keep falling out.
The first week of recovery at home featured lots of tiredness and feeling a bit like I'd been hit by a bus, simple things like showering absolutely floored me for the first few days but then actually, I've been used to that kind of fatigue coming and going over the last year and it certainly wasn't anything that worried me. Fatigue is a classic MS problem and is another thing that can't be predicted. Some days are totally normal and other days I have to rely on Jonny to wash and blow dry my hair for me. On those days even finding the energy to lift my arm above my shoulders to brush my hair can be hard, which is super frustrating but I think Jonny must've secretly wanted to be a hairdresser because he seems to love doing it for me bless him!
That level of fatigue used to upset me a lot, but luckily it hasn't been an issue for the last few months. Frustratingly my hair is actually thinning post treatment but on the flip side, I still have A LOT of hair thanks to my Welsh genes. I've also got a few friends who seem to be experts in hair care who have recommended all sorts of things to keep me looking like cousin IT. Picture below for those of you that are too young for that reference. I'd like to point out that actually, I'm also too young seeing as the TV series started in 1964...
Other new post-treatment symptoms I've had to get used to are night sweats which, sorry to gross you out, should really be sponsored by Persil or Ariel and renamed "night waterfalls" because I now seem to sweat to the point where it's like someone has thrown a bucket of water over me and bedding and pyjamas end up being washed daily, argh. Good practice for the menopause I suppose!
I've also developed the ability to get chilblains at the drop of a hat, probably from not moving around much as they're usually caused by poor circulation according to Dr Google. I can be sat happily reading a book, feeling normal when boom! My fingers and toes become itchy, hot and swollen within a matter of seconds. Luckily I have a rather large supply of piriton thanks to the goodie bag of drugs I was sent home with when leaving hospital, so the chilblains quickly disappear within a few minutes, phew.
Once of the most enjoyable side effects from the treatment is the steroid munchies, which have been fairly prolific. I suddenly get urges to eat everything and anything although I must admit I mainly have cravings for sweet things so chocolate is high on the binge eating list - swiftly followed by bananas thankfully. I seem to have a normal appetite for meals but the snacking in between is getting a little out of hand. I honestly feel a bit like Augustus Gloop from Charlie and the Chocolate Factory sometimes. Thankfully my weight has stayed mostly the same despite this, I'm fairly sure that I probably lose half a kilo each night from the night sweats, only to put it back on during the day! Don't try this at home folks, this is not the latest fad diet.
Last super thrilling symptom and the one that is the most annoying is shortness of breath. This seems to come on both randomly and after physical exertion, which in my case is mostly just running up the stairs these days. I can't predict the pattern of it yet which is annoying. For example, I can talk on the phone to Mum for 30-40 minutes and feel fine, but when Jonny comes home from work and the verbal diarrhea kicks in, I run out of breath after about 10 minutes of talking. Perhaps that says more about Jonny's ability to get words in edgeways than the actual perceived randomness of my shortness of breath! Either way, it's a little odd. I've been given an inhaler by the hospital which I use when desperate but I'm not hugely keen on relying on it. Deep breathing helps A LOT, the difference in my breathing after taking 30 focussed deep breaths is huge. I can only describe it as feeling like the air isn't going into my lungs but is coming out fine, or feeling like I'm breathing in "thin" air. After deep breathing things feel more normal.
I have also started trying to make sure that I'm moving around regularly for short periods of time. I've been taking 20 minute walks around our housing estate and more recently I've been reacquainting myself with the wii fit, how very retro.
I can't really remember how long I've had it for, but the wii came out in 2006 and I remember that I bought it with some of my pit band earnings (I should elaborate, not as in coal mining, pit as in theatre pit) whilst at uni so I think I've had it for roughly ten years. I clearly hadn't used it for some time as the moment I got on the wii fit board it genuinely said "Is that really you Claire? You seem a lot heavier than the last time you logged in!". SCREW YOU WII FIT! To be fair to the pesky thing, according to my user profile when I last logged in (6 years ago it reckoned!) I had apparently weighed 2st less.
Pfft. I shall not be bullied by judgmental technology!
So officially I have one more week to get this breathlessness problem sorted before I go back to work. I am super keen to get back in the classroom but very mindful of the incompatibility of being breathless and a music teacher. I'm hoping to keep getting myself up and about a bit more so that my stamina improves enough for me to be able to holler over the cacophony of 30 xylophones and remain standing up at the same time. Simple pleasures really!
I also hope to be out and about a bit more from this weekend onwards, as although the risk of catching everything and anything germy is still high, I'm not quite as terrified as I was before. Jonny unfortunately caught a cold at the end of my first week which threw us into chaos, but thankfully after being banished to the spare room for a week and my slightly OCD cleaning routine with door handles, towels, bedding, cushion covers, (you name it, I've washed it twice this week) I am pleased to report that so far I have not caught the cold! Woohoo! Who needs white blood cells?
C x
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