A Week in the Life of an MSer – The Weekend

I decided to write my post about the weekend all as one thing as it’s tough to break down hour by hour.

On Saturday, the weather was awful so we decided to give Poppy’s play date a miss. It was a relief really – as anticipated after the busy week that I’d had, I knew that I would suffer. We went out for breakfast and although I wasn’t suffering any pain, I was conscious of feeling really tired and like my legs weighed a tonne. Most of the time, my fatigue is mostly extreme tiredness, but it’s rare for it to wipe me out physically. But on Saturday it really did, and that carried through into Sunday.

Something else that was up over the weekend, which those closest to me typically bear the brunt of, was my mood swings in full force. When I’m like this, I’ll react disproportionately to the situation. So I go from chilled to raging in about half a second and it will be completely OTT for whatever it is that’s happening. And just as quickly I’m fine again. Luckily Dave is very forgiving of this and takes it in his stride, because if he didn’t I don’t know if we’d still be together.

I also received (another!) letter from the hospital on Saturday just confirming the results of my recent blood tests. My lymphocytes are still on their way up at a good pace (I’m at 0.7 for anyone that’s counting!) and I’m pleased to report that I still don’t have Hepatitis. Another positive is that my Vitamin D levels are ok which means my daily tablets are doing their job!

On Sunday, I don’t think I even dragged myself out of bed until 12 ish – I wasn’t sleeping, I just didn’t feel as though I had the energy or motivation to move. My legs were feeling really cramped too. I couldn’t bend my knees and when I finally did drag myself to the shop to pick a couple of bits up, my sensory overload was at Level 10! Sensory overload has been getting worse for me recently. I have suffered with it at work for a while, when there are too many conversations going on at once, but it has started to get bad in public places where the lights are bright, there are lots of crowds and it’s noisy. Luckily, I ran into a friendly face in the shape and form of Dave’s brother and seeing him just seemed to ground me and bring me back down again.

I got home and after spending an hour relaxing, I got to playing with some essential oils and made some bath salts. I succeeded in my task but an hour later my legs, feet and back were in a lot of pain so I had to sit down and declare the task over!

So, that’s a week in the life of an MSer. Or at least this MSer. If you speak to someone else it could be completely different, and if you caught me on a different week it could be totally different again! This was a very social week by my standards, and that level of activity and socialising always comes back and haunts me a day or two later. Really, my life isn’t that much different to yours. I just ache more easily or tire more easily. I hope this mini-series has provided some insight into what life can be like with MS.

A week in the life of an MSer – Friday

6.55am – Get up

I get up and I’m feeling pretty good! I love a Friday and I’m also going out tonight. I’m ticking something off my bucket list and going to a murder mystery!

8.30am – Call with a colleague

Apparently it’s one of those days. Every other thing Laura says I have to ask her to say again. It’s like my brain and ears refuse to work together. Ears hear it, brain doesn’t process it. It’s horrendous. I come off the phone wondering if I’ve even asked her question…

10.30am – Nystagmus

I hate looking over someone’s shoulder at their laptop. If you want me to look at it, I need to go straight on. Today my nystagmus is playing in full force. What’s one of them? It’s an involuntary flicker in the eye. Sometimes they call it dancing eye. No idea why. It’s not nice! Basically when I look to the left or right for too long, my eyes try and pull back to the centre. It has the impact of making me feel really quite sick! It’s no big deal – nothing MS wise is as long as I know how to adjust and work around it. So with this, I tend to just make sure I’m facing straight on.

3.00pm – Finish work!

I booked a couple of hours off work so I can have a quick nap before going out!

5.30pm – Getting Ready

Just as I get out the shower and I’m all clean, obviously I decide to break into a sweat. I’m absolutely boiling hot and can’t cool down. The knock on effect is I start getting irritable and flustered whilst getting ready. The dress I’m wearing also requires some safety pinning into which Dave has to help with. Part of the less obvious impact that MS has on me includes struggling with really fiddly things. I just have really clumsy hands!

7pm – Arrive for the murder mystery

I’m wearing heels tonight albeit reasonably low ones. When I first moved up north I never used to think twice about wandering around in 4inch heels all day. In fact I used to joke that you can take me out of Essex, but not out my stilletos! Now I can’t do it. Not because of the pain, but because my balance is so shocking. I’ve not even started on the prosecco yet and I can feel myself wobbling about like I’ve had a bottle!

11.30pm Home

I’ve had a fab evening at the murder mystery! I didn’t guess who did it but I really enjoyed it and I laughed more than I have in a very very long time!

A week in the life of an MSer – Thursday

6.40am – Get Up!
I have to drag myself out of bed as soon as my alarm goes off this morning as I stayed at Dave’s last night and he lives a bit further away from work than I do. I really struggle to get up and go most mornings. I’m ok once I’m up, but it’s really hard to get going.

8am – Get to work
I arrive at work and grab a coffee. I need it today. Although my new shift pattern has made Thursday easier for me, it’s still the day I’m ALWAYS exhausted! I’m also hoping a coffee will warm me up as I’m freezing today.

10.30am – Walk
I go for a walk to pick some stuff off the printer and find my ankle has decided to start causing some pain. It really is inconsistent and I’m still not sure what triggers it.

1pm – Sick
I’ve got a real sick feeling today. It’s just like my food won’t settle. I was speaking to someone else who has Lemtrada recently and she said she suffers with it too. It seems it’s linked to the fact that when we went through the treatment, we lost a lot of the “good gut bacteria”. That means that sometimes food doesn’t agree with me properly. This will definitely improve over time though.

5.30pm – Leave work
Just before I leave work, I write down a list of what I need to get done tonight. There’s only a couple of things, but if I don’t write it down, I’ll definitely forget!

7pm – Bath
I get in a bath of Epsom salts. Fatigue hasn’t been too bad this week but I tend to find I either suffer from fatigue or pain. It’s always one or the other! My bath is reasonably cool as I’ve despite the fact I was freezing this morning, I’ve been absolutely baking since I got home and I’m struggling to cool down. The reason I’m using Epsom salts is they allegedly help with cramping and muscle pain.

8pm – Reiki
I spend half an hour sending a couple of friends some distance healing and am met with really positive feedback. I also do a quick 20 minute therapy on myself. I’ve got a little slack with using Reiki to heal myself and need to get back into good habits with it.

9.30pm – screens off
I’ve recently developed the habit of trying to put my phone down by 9.30ish. I’m trying to find more quality time reading a book. Getting lost in a book is a great way to distract me from any cramps or pain.

10.30pm – Lights out!
I drop off with ease, although for a Thursday, this is pretty late! Today’s been an alright day – tired and a little bit of ankle pain, but all in all my spirits are in a good place and that always makes MS easier to deal with!

A week in the life of an MSer – Wednesday

8am – Wake Up
A natural wake up this morning as no work. Just as well really as legs feel terrible. Not dragging myself out of bed in a hurry.

9am – Get Up!
Time to get up – I’ve got a Reiki appointment at the MS Therapy Centre at 11, but like to get in just before for a natter with some of the other attendees. I stick on a load of washing and grab some breakfast.

10.30am – MS Therapy Centre
As always, it’s a mad-house, even though it’s not too busy. After seeing a woman in her 80s with MS on the news last week who does it every week, the centre are planning a trip to the indoor sky diving near the Trafford Centre in Manchester. I get my name on the list – seems like fun and boldly tell Pete (the chairman) I’d be up for doing a charity sky dive for the centre. My Reiki Master, Nicola is the therapist at the centre and she gave me my certificate for passing my 2nd degree attunement course. I’m now qualified as a Reiki practitioner! Then I head in for my therapy with her.

Midday – Reiki done!
Although I can give myself Reiki, it’s never quite the same as it is as receiving the therapy off someone else, so I like to go and receive one every couple of weeks. It keeps me well balanced when I’m giving a lot of energy healing to others. The weirdest thing happened today. I always know when Nicola has picked up on something as there’s something in the way she asks me how I am. I told her I have no idea what happened but it was so weird right at the end. We think I might have attempted to leave my body – she literally sensed it and I felt a whoosh down out the bottom of my feet. It’s not really the kind of thing you can put into words. She said overall things felt very peaceful though which is a good way to describe how I feel at the moment. My therapy leaves me feeling relaxed but energised.

12.30 – Back out
This Wednesday I’m definitely a lot busier than I usually am – I try to relax a lot more but as I’m not feeling bad from a fatigue point of view, I’m taking advantage of it! My work BFF who left last week has picked me up for us to go out for a meal. It was so nice to catch up even though she’s only be gone a week!

4pm – Home
I spend about half an hour chilling out before heading over to Dave’s. I feel ok, but my legs are still feeling a bit “off”.

5pm – Dave’s
I get to Dave’s and am welcomed in the warmest way from Pops! I get straight in my pyjamas and into bed!

6pm – Poppy cuddles and TV catch up
On the couch with Pops and catching up on the soaps (yes, yes. I know! I love Corrie though!) We don’t really move. Dave has a nap and I read a bit of my book between episodes. The whole evening is just quite chilled, and also very lazy!

10pm – Bed
Head to bed so I can get half an hour of reading in before I go to sleep. I’ll be up a little earlier tomorrow as I’m going to work from Dave’s and he lives a bit further away.

11pm – Sweats
I’m getting on top of the covers this evening. It’s one of those nights where my body temperature just doesn’t want to drop. I’ll get in at some point on the night when I finally cool down!

A week in the life of an MSer – Tuesday

6.50 – Wake up
Really don’t want to get up today! I knew I’d pay for last night’s outing but I’m off work tomorrow so that’ll get me through the day! I do my usual body scan to see what’s hurting and what’s not. There’s a little twinge in my ankle but I think after I’ve walked about a bit it should be ok!

7.45 – Arrive at work
I’m on my own for most of today, so hopefully I’ll be reasonably busy to keep me occupied and symptoms at bay!

10.30 – Ankle
This flipping ankle of mine has flared up again. Oddly, it’s actually better in shoes with a small wedge, but I’m in flat shoes today.

1.00pm – Dinner
I have a flick through Facebook on dinner. When I first got diagnosed with MS I joined loads of groups then proceeded to leave them all. I’ve rejoined one called MS-UK though and it’s really good. It’s a great place to check in about random symptoms and knowing if that’s MS or not. Today I’ve learned that my having a constant need to itch it totally related to MS!

6.00pm – Out of Office
That’s me done until Thursday now, so out of office is on and I switch off the alarms on my phone at the same time, otherwise I’ll be getting woken up dead early.

6.30pm – Home
I’m knackered and I strongly debate getting a take away. I really cannot be bothered to cook. I end up making a one pan rice thing though. There’s enough for three days too so I won’t have to worry about cooking for a couple of days.

7pm – Mail
I’ve come home to not one letter from the hospital today but five! The first one is to cancel my next nurse appointment, the second is to give me my blood forms for my next blood test, another two are more appointments and the last is from my consultant summarising my annual check up last week. All was well and no major concerns. My 25 metre walk took six seconds longer but I don’t think that’s a concern. Last year I tried really hard feeling like I had something to prove so I probably almost sprinted! He’s also recommended I increase my Vitamin D to 5000iu a day. To put that in a bit of perspective, the High Dosage off the shelf Vitamin D tablets are about 1000iu.

8.30pm – Bath
The weather has been cold and horrible today. When I get that cold, I struggle to warm up and that’s when the twinges and cramps in my legs start. The reality is, I’m pretty lucky – I can move about like normal (with the occasional hobble) and apart from my ankle, the worst it is is discomfort – not real debilitating pain.

10pm – After Life
In bed and finishing After Life – the new Ricky Gervais series on Netflix. Definitely watch it! It’s brilliant. Whilst watching, I give my legs some Reiki in the hope it’ll ease some of the cramping and restlessness.

11pm – Lights out
Time to go to sleep. Today’s not been a bad day in terms of fatigue – just slight dull aches and discomfort in my body.

A week in the life of an MSer – Monday

As March is MS awareness month, I thought I’d write a series on a week in the life of an MSer. I’ll write everyday but I might not get them posted everyday but I’ll do my best!

Enjoy!

6.40am Wake Up
Although I feel groggy, there’s no aches this morning which is a relief as my ankle has been giving me quite a bit of hassle over the last few weeks.

8.02am – Arrive at work
Get into work and log on. Catch up with a couple of colleagues about how my weekend was. We just slept a lot this weekend which was much needed!

9.30am – Toilet Trip
Luckily I’m like clockwork in the toilet department. Because of certain nerves that are damaged, I don’t usually realise I need to go for a number two until it’s VERY short notice 🙈

11am – I need something to do
I’ve run out of stuff to do. And this is when my fatigue really sets in. Even though I’ve slept all weekend I’m feeling tired. Fatigue always gets worse when I haven’t got stuff to distract me from it.

Midday – Found stuff to do
I’ve managed to find something to keep me occupied and I’m feeling better for it. It’s a bit early for dinner though. I work longer days so although colleagues are going for lunch, I’ll probably leave it another hour or so

1pm – Lunch
I take my lunch on my own – the time on my own helps me recharge my batteries. I tend to switch off with a book for half an hour. I never used to take my dinner and I was really struggling with fatigue. So I’m now trying to behave myself and actually take my dinner break!

4.30pm – Final Stretch
I always used to have finished work by now, but I’ve changed my shift pattern this year. I now work four longer days with a Wednesday off. It’s really working for me, having that rest in the middle

6pm – Finished!
Today has been a good day but it’s not done yet. This evening I’m heading over to an Essential Oil and Chakra course. I’ll grab food on the go.

9.30pm – Finally home
It’s been a really long day so I’m straight in my pyjamas with my feet up catching up on MasterChef! I’m starting to feel the tingling a bit more prominent in my feet and have a bit of restless legs. This is totally normal when I’ve been really busy all day. No pain though. I’ll also take 4000iu of Vitamin D.

10.40pm – Sleep meditation
My “sunrise/sunset” alarm clock goes off at 10.45pm so it’s time for a quick 5 minute meditation which I can guarantee will send me to sleep!

“But you don’t look sick.”

I read an article earlier today which raised the point of being asked to give up a priority seat on the train. It stirred something in me and I felt the need to share my take on this story. 

Not long after I was diagnosed, I was on the tram in Nottingham during rush hour. I was knackered and my balance isn’t the greatest – especially on the tram! I also struggle with sensory overload and I’ve found that crowds, like when you’re squashed in like sardines, really unsettling. I’ve come close to experiencing panic attacks in those environments. So on this day, I chose to sit down in the only available seat. A priority one, which we all know are for disabled people, pregnant women or children. If we are sat in one, we know we should move for someone that gets on that needs that seat more than us. 

I really needed that seat that day. But someone got on with crutches and a broken leg. So I immediately got up and let them sit down. But the question is, should I have? But then how do other people react to that if I don’t? People certainly look at you with a certain amount of judgement. 

Recently it was brought to my attention that someone had questioned the fact that I park on site at work but I can also drag myself to the gym. Which in fairness I haven’t done for a while as I’m struggling with fatigue. Again, it’s that same judgement as on the tram. At work, we’re only allowed to park on site permanently if we are working a late shift, or if we are a blue badge holder. The alternative is that we park a short walk away on the Bolton Wanderers stadium car park. It’s roughly a 7 – 10 minute walk. No, I’m not disabled enough for a blue badge and I wouldn’t want to be disabled enough for one. I wouldn’t wish that upon myself or anyone. But what I can say, is I wouldn’t in a month of Sunday’s park that far away from my destination anywhere else. It hurts me to walk continuously for anything more than 5 minutes. The pain varies. Some days it’s like my calves are on fire, on other days my right ankle is really tight and causing a lot of pain. If it’s not that, I’m just bloody shattered and it’s a walk that I just don’t need. My legs feel like they’re being dragged through treacle.

But back to the gym. It’s not like I’m running on the treadmill. In fact I barely go on the treadmill. If I am in the gym, I’m generally lifting weights, in an attempt to keep my strength up. As it tends to be static, it doesn’t cause the same pain as walking can. And if I’m having a bad leg day, I just work the top half of my body. If I’m tired, I just don’t go to the gym but might do some yoga at home. The bottom line is, if you don’t use your limbs, you might just lose them.

The point is, when you have an invisible illness you’re constantly being judged. Yet it feels as though no-one takes the time to understand. Choosing to remain positive about your condition can be a poisoned chalice too. Because if I’m smiling, I surely can’t be struggling, can I? Yes. Yes I can. 

Actually, “how can you go to the gym, but need to park on site?” is an absolutely fair question. Without being in my shoes, I wouldn’t expect you to understand. Same as the priority seating on public transport. The message to take from this blog, is if you have a judgement about someone, seek to understand. And that’s whether it’s about an invisible illness or otherwise.