Category: health

Spoonies

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!

They can’t stop me smiling!

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!

Jelly Legs and THE RASH

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+

Alarm clocks are overrated anyway!

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.

He’ll claim he’s sick of selfies but really he was upset after being told that he’s an infection risk, and to get off my bed.!

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.

Half way point!

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!”

5 more sleeps.

Less than a week to go!

It’s gone so quickly. Hopefully this time next week Day 3 will be complete.

I think I’ve got everything on my “hospital packing” list now, so I’m ready! I had to make sure I had some respectable pyjamas – you honestly don’t realise how much of a slob you are until you need clothes to go into hospital 😂

I’ve been warned about this vile rash that you get as a reaction to the infusion on Day 3 or 4 so I’m loaded up on Eurax cream and Aloe Vera gel. 1 in 10 manage to avoid it, but I’m not counting on me being one of the lucky ones! I’ve had warnings of offensive tastes from the steroids too so I’ve stocked up on mint imperials. I also succumbed to ordering a Love Island water bottle too- hopefully it’ll arrive before I go in. If I’ve got to drink about 10 gallons of water a day, I might as well make it sassy!

This week when asked about how I feel, I’ve answered that I’m just looking forward to a really long break from work and a lot of sleeping. Dave’s fuming – he thinks it’s a huge waste that I’ve been signed off work for the duration of the World Cup as I’m really not a football lover. I can’t even find it in me to be slightly patriotic towards my country. Not a fan.

Yesterday I thought I was going in to see Danny, so I was armed with a tonne of questions. Turns out I was just getting some pre-Lemtrada blood tests. I dunno what they were for exactly but as usual, they took loads.

Having caught up with Danny today I’m feeling really reassured now. He said he’ll pop in to see me next week, so I know I’ll be getting at least one visitor.

As it turns out, they’re really flexible on visitors which is good. I’ve told Kat and Steph to come on Thursday so that they can laugh when the sexy rash appears!

I’ve got more of an idea of what Day One holds now. On Monday, I need to be at Salford Royal for 8 am. They’ll start off with some blood tests and a urine sample followed by sending me off to the cafe for an hour as they wait for the results to come back. Then providing they’re all ok, they’ll request the lab to mix the Lemtrada and then I’ll be hooked up to an hour of intravenous steroids before they move onto the Lemtrada. I’m bracing myself for a LONG day.

In the meantime, I’ve got a nice a weekend planned with a Poppy play date on Sunday and Dave and I are going to an Evening with Eddie Hall Saturday night.

The next time I blog, Day One will probably be done! Eeeekkk!

Me and my Girls! We went out for Pre Hospital cake on Sunday 😊
Said cake.

Life just goes on.

Being diagnosed with MS was a funny old thing. All hell broke loose because I’d lost the sight in my eye. I had test after test and appointment after appointment. Waiting and more waiting. As I chose to be open about my diagnosis, every question of “how are you?” was accompanied by a sympathetic, concerned head tilt.

I was on a roller coaster of emotions. Some days I found the whole thing really surreal, whilst on others I’d be cracking every possible non PC joke at my own expense. One day I felt particularly indignant whilst I was out for breakfast and overheard some older boys whinging about all the seemingly able-bodied people parked in a disabled bay outside of Sainsbury’s. Not all disability is visible you know (oh God, the sense of entitlement!) Fortunately it was rare, but I also had days where the tears wouldn’t stop and I’d find myself in quite a dark place.

I wrapped myself up in cotton wool a bit. I stopped going to the gym. I tried to explain every personality trait or ailment as MS, as I struggled to work out the difference between Jo, and Jo with MS. I read far too much into it. But I also felt like I needed to live up to the “label”. Because quite frankly, it felt ridiculous that I was now technically disabled. Sure, I’m in pretty much permanent state of exhaustion, but people are always tired. A few simple “adjustments” to my life, like taking the lift instead of the stairs because my legs weren’t working properly today became a huge deal to me. I became the opposite of suffering in silence, as I had done prior to my diagnosis. Suffering feels like a strong word, I just dealt with it. I’m not sure what stopped me just getting on with it like I had done before. I guess I felt I had a licence to be honest about how I was feeling, but also all these things that I’d made insignificant before were suddenly something I should be taking far more seriously. The pendulum swang way too far though! I felt like I was making a huge noise about the changes.

Somewhere along the line, people stopped asking me how I was doing. They had realised that physically, I was more or less ok. The world hadn’t ended. I didn’t have the “bad type” and I’ll probably be lucky and not end up in a wheelchair.

I wish I could have caught on as quickly as them!

I’m almost in that place now. Where it’s just part of who Jo is. Not something that I have to get my head around co-existing with every single day. I’m having a lot fewer bad days, and they have reduced to fleeting moments. I’m back in the gym and I’m making fewer jokes in bad taste. Some days I don’t even think about the fact that I have MS, although my impending treatment is kinda making that tough for the time being. But I can see that I can get there.

I can see that life just goes on.

Me, getting on with life and not letting anything wipe the smile off my face!