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 ๐Ÿ™ˆ

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. 

Freedom from Dietingย 

I want to take a minute to talk not just about this picture, but what it represents. 

Depending on how long you’ve known me, or followed me on various social media sites, you know I’ve been a serial dieter. Slimming World, Joe Wicks, Calorie Counting, Macro Tracking. You name it, I’ve probably tried it (never did 5.2 though….more like 7.0 ๐Ÿ˜‚). I work hard in the gym (although that’s on the back burner at the mo) so by rights, surely I should be a lot slimmer than I am. Trouble is, after years of jumping from one diet to another and binging because I’ve deprived myself, my body doesn’t know if it’s Arthur or Martha anymore. It doesn’t know if I’m going to over feed it or starve it. 

Over the last year, I’ve ditched the diet. And it’s very freeing. I haven’t really respected my body though. I’ve just enjoyed eating guilt free! There’s been a shift in recent weeks though. Linked to Reiki perhaps? According to my Master, Nicola, it’s natural for people to become a bit more conscious and mindful after they’ve been attuned.

So basically, I’ve thrown away my diet rule book which has been scary at times. Especially when I’m well aware that I have put on weight. I was kind of alright with that for a while. I’m trying to switch to a meat free diet, which I’m succeeding in. However, due to a lack of imagination, I’m just replacing meat with more carbs. So I’m succeeding, but not in a healthy way. 

I do believe however, that I have finally reached the point of wanting to become more in control again. But I’m ready to approach it in a caring way. I have no desire to deprive myself, or trick myself into thinking what I’m eating is dead yummy and despite a lack of calories, an adequate replacement for the real craving. 

And we’re back at the peanut butter hot chocolate, pictured. I think I bought this during the Joe Wicks phase. The instructions say to mix with hot water. And it’s only 83 calories!!! Well that obviously means I should consume it with a big smile on my face exclaiming how I can’t believe how something so low calorie can taste so amazing. This though. This is shit. Even me, a seasoned faker, couldn’t do it with this.

So for the past three years it’s been condemned to the back of the cupboard. Today, I had a bit of a clear out of that “back of cupboard”. It was full of almost empty seed packets (chia and flax – also courtesy of the curly haired fitness freak), forgotten tins of tomatoes and those odd bits of pasta that aren’t enough for a full meal. I’m proud to admit however, there wasn’t a mugshot in sight (if you know, you know!)

Of course, the point of this story, the hot chocolate, was also found, lurking. The thing about it though, is it smells incredible, and I really struggled to fathom how it could taste so dire. Before I resorted to chucking it in the bin, which really should have happened ages ago, I was curious to try it again. But this time I did it with hot milk. Yep. You heard. I broke all the rules and made it with a WHOLE MUG of semi-skimmed milk. I see your 83 calories and raise you 200!

You can shove low calorie up your arse. This hot chocolate is a thing of beauty with hot milk. It totally transformed it ๐Ÿ˜

What I’m trying to tell you here, is that I totally lost my way with food. I was programmed to forever find fat free, lower calorie or syn free option. I lost all enjoyment with food. It became something to reward me or punish me. I stopped experimenting in the kitchen and making fun creations – which I had previously loved. I followed rule books, and without a shadow of a doubt, the wrong one. I wasn’t unhappy, but I was obsessed. Now I’m starting to enjoy it again, and I’ve lost that guilty feeling. I’m naturally starting to just make better choices

Finding Reiki

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The title of this blog is slightly misleading. Because I didn’t find Reiki. It found me, as is the case for most people. See, you feel called, or drawn to Reiki.

Reiki means ‘Universal Life Energy.’ It’s a gentle, non-invasive holistic therapy which can be used to heal both physically and emotionally. If you are attuned to give Reiki, much as I joke about having ‘healing hands’ that’s not strictly true. You are simply able to act as a channel for this spiritual, universal energy to reach the recipient. Reiki is an intelligent energy, so whilst intentions can be set for how it works, it will always work for the highest good. In other words, it will help you in whatever way you need. I find it really tough to explain actually, and if you feel open to it, the only way to “get it” is to experience it.

My journey with Reiki started in July last year when I saw an event on Facebook for a First Degree Reiki attunement at the MS Therapy Centre. For unknown reasons, I felt that I just had to go on this course. I’d never even had a Reiki therapy at that point.

The course was booked in for the 15th September and before then I did finally experience Reiki and I just knew I was on the right path. My first therapy was about a week before I was due to go back into work after I’d been on long term sick after Lemtrada. Anxious is not a word I would use to describe myself. I’m pretty chilled out. But I’d started to get really worked up about going back to work. I had the most horrendous knot in my stomach. Reiki definitely helped me to relieve that. I had a “healing crisis” after my first session. This is normal in lots of people as “bad energy” gets unblocked from your system and can present itself in lots of different ways. For me it was uncontrollable sobbing and a splitting headache the day after! It didn’t put me off though and I had a further treatment before attending the course.

The First Degree attunement was easily the most spiritual experiences of my life. First degree has a heavy focus on self-healing, but also enables you to heal friends and family, pets and objects. So basically anything! Even food. You’re not going to make it organic or anything, but you can dissipate any negative energy that might be in it. Following on from the day long course, I had to practice Reiki everyday for 21 days and keep a journal of my experiences. This was the point at which I became a Reiki cynic. How on earth was I able to do this undefinable, sacred, pretty much magic, healing thing? I was totally open to receiving it from Nicola (my Reiki master), but I just couldn’t get my head around the fact that I was able to do this “thing” that I was in awe of. Receiving it is the most incredible gift and I really struggled to believe that I could give it.

In spite of my doubts, I persisted because they say that the more you use Reiki, the stronger your ability to attune to the energy becomes  And your confidence grows too. The first “a-ha” moment came for me six days after my attunement when I gave Poppy her first Reiki therapy. I had read a lot about Reiki for dogs and how you can give it to them. And she was exactly as they described. She remained so calm, and occasionally moved to direct me where she wanted my hands to go. Dogs are far more intuitive than us and just “know”. When she had had enough Reiki, which was about 40 minutes worth, she got up, licked me on the nose and walked off. Just like they described in what I had read. I couldn’t believe it! Maybe, just maybe…

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By Day 16, when “switching on” Reiki, I had started to feel a shift of energy in my hands. I was starting to observe some really positive changes in my life. I was losing some obsessive habits that aren’t good for me. At the end of the 21 days, I received my certificate and continued to practice Reiki on myself whenever I felt called to do so. I purchased a massage table so that I could be comfortable whilst giving it to friends and family.

I eventually plucked up the courage to give the girls a therapy and I was met with an overwhelmingly positive response, and for the first time, I gave in to intuition whilst giving Reiki. It was a real confidence boost! After that, I continued to give the occasional therapy to people who wanted one but gave it mostly to myself and Poppy (when she let me!)

On Saturday, I had my second degree attunement. This is so exciting, because it means that I can call myself a Reiki Practitioner should I choose to. That means, I can have a business, although this isn’t something that I feel called to do right now. In addition, I can send Reiki over distance and to the past and future. In order to get my certificate, I need to do 30 of these types of therapies. At least 15 of these should be over distance. In addition I need to do four hands on therapies and receive four.

I am loving this journey so so much and I would say without a shadow of a doubt, this is the greatest thing I’ve ever discovered. Even better than sliced bread!