“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 Dieting 

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 😂). 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 😍

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

banner

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…

img_20181010_113148_5752723363952861776226.jpg

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!

 

 

 

 

Going Strong

Although I go for appointments every month I only see Danny once every three, and today was my day to see him. The last couple of times I’ve been to see him I’ve been feeling pretty fed up, but today it was nice to be able to go in with a smile on my face. 

I vowed not to get too hung up on my lymphocytes (white blood cell count) because it’s normal for it to fluctuate month on month. There are also theories about the slower it building up, the more effective the treatment. I didn’t want to get obsessive about that and wanted to do my best to remain calm and to just let Danny let me know if there was anything to worry about. I did however give in today. After a bit of a cold that I recovered better from than the rest of the family over Christmas, I was a little concerned and it made me want to check in.

My white blood cell count is at 0.6. For the average person, that’s rubbish, but for me, that’s good. The idea is that they get back up to 1 (which is the low end of a normal person) in time for the second round of treatment this year. So six months on and I’m just over halfway there which is a good sign. I’m glad I gave in and asked!

I’m feeling good so far this year I don’t tend to prescribe to the whole “this is my year” vibe, but I actually feel like this year could be. Who knew?! Certain aspects of my life feel a little odd at the moment but they’re definitely not dulling my sparkle, which is all I can ask. All in all, there’s no January blues to be seen here, and I’m feeling really uplifted.

I’ve started my new shifts at work now too. Today’s my second Wednesday off since going on them but it’s way too difficult to tell if they’re working for me yet. Surprisingly though, working until 6 is not as grim as first anticipated. Last Thursday and Friday it would be fair to say that I was just as bloody knackered as usual, but after 18 days off over Christmas it’s no real surprise. So I’m not calling it a failure yet!

For anyone who isn’t a friend of mine on Facebook, you might not know that I have been studying an HR qualification – Advanced Employment Law. The assignment was due around about the time that I went blind in my left eye, so I ended up deferring it. That was 18 months ago. The CIPD (who I studied with) have been great and continued to let me defer it, but in October I decided that after roughly 15 months, I needed to just knuckle down and get it done. I found out on Friday that I’d passed it which I’m over the moon about. It’s a stress off the list and it’s another string to add to the bow. Prior to being diagnosed I was really keen to pursue a career in HR case management. It’s still not a complete write off, but I guess my desire to further and develop my career is not a priority at the moment. I’m really just happy doing a good job in my current role in Learning and Development. MS had made me realise that a career isn’t the be all and end all. And at only 32, there’s nothing stopping me picking it back up again when I feel called to do so. 

I feel as though I’ve spent my life developing myself academically, and right now I’m enjoying developing myself in terms of who I am and how I am. I’m enjoying pursuing mindfulness and meditation. Exploring my spirituality. On Saturday, I’m doing my Second Degree Reiki which will make me a Reiki Practitioner and that’s really exciting too.

When people ask me how I am, I often say plodding along. But right now, it’s fair to say I’m skipping! 

Hey there, it’s Yogi (Bear)

Happy New Year! Hope you’re feeling good. Promise me you didn’t say “new year, new me” and said “new year, same old awesome me!”

Anyway, as luck would have it, my endless weeks of fatigue which have seen me not step in the gym for roughly two months has come to an end. So obviously, just as all the usual January hordes are turning up, I get my mojo back. Bloody marvellous. It’s ok though. I have a cunning plan for the next 30 days. THEN I’ll go back to the gym!

Last January, I signed up to Adriene Mishler’s 30 day Yoga journey. Because I never see ANYTHING through, obviously I didn’t complete it. I think I did about three days, decided it hurt too much and I couldn’t make time for it, and gave up. This year however will be different. This year I want to continue to just work on my spiritual, mind and body connection and I feel like Yoga is just another step in that journey. And this year, if I miss a day, that’s ok. I’ll just pick it back up again the next day. No-one, anywhere specified that it had to be completed in 30 consecutive days so I literally have no idea why I put that level of pressure on myself!

screenshot_20190103_1907067121308097811899899.jpg

This years journey is called “Dedicate.” Which I fully intend to “dedicate” myself too (I’m here all week!) Today was Day 2 and just like yesterday (and last year) it was really bloody hard. When I was in my late teens and early 20’s, I loved Yoga and was also a huge fan of Les Mills’ Body Balance. I was also about five stone lighter and three dress sizes smaller. And a lot more flexible. And MS hadn’t broken half of my nerves that help with balance!

It’s really bloody hard when you know how easy you have found it historically. It’s really frustrating. Something that I have previously found peaceful and calming is (did I mention) REALLY BLOODY HARD!!!!! Trying to find peace in all that huffing, puffing and complete lack of grace feels pretty impossible.

BUT!

This is a marathon. Not a sprint. Today was easier than yesterday. And my next session will be easier again. I’m on Day 2 of 30. Day 3 of 365. So what if I’m feeling more “Yogi Bear” than Yogi. We go on.

img_20190103_191434_0368182759298743286496.jpg

In other news, I mentioned a few blogs back that I was exploring options to help manage my work-life balance better. Now that it’s agreed, I can say that I’ve compressed my hours. So I will be working four long days with a Wednesday off which will give me a little relief mid week. I start on Monday, and I’m looking forward to seeing how it might help me. Some people have asked me why I haven’t just dropped a day, but that would result in losing 20% of what I earn. Which is a lot! I don’t feel as though I want to do anything quite as dramatic as that just yet. Not until I’ve tried other options. And I really feel like this one will work for me. So I’m feeling quite positive.

I’m due to see Danny (my MS Nurse) in a couple of weeks for my three monthly appointment, and I have my blood test at the same time. I’ve resisted getting obsessed over my lymphocytes up until this point, but I’m going  to ask him where I’m at when I see him. I’m also planning to get back in touch with the counsellor as I want to get started on sessions. Although I feel in such a better place and feel as though I have turned a corner, I feel like I need to tackle any demons that are lurking. I might just be suppressing them.

Finally, I’m so excited to say that I’m going on the next part of my Reiki journey on 19th January. This will enable me to call myself a “Reiki Practitioner” and send it over distance. I’m so excited about this as I’d love to be able to send it to my parents who live a good 250 miles away from me.

All in all, I’m going into 2019 feeling really positive, and I hope you are too!

Project You.

The self-love movement saved me in a year that I felt completely let down by my body. It gave me a distraction, but also helped me to identify what I’m grateful for and appreciate the little things in life. In spite of my body not quite doing what I wanted it to, I could forgive it and fall in love with it.

Personal growth and development has become a huge part of my life, but what I seem to find is that to do this socially (i.e. with other people) it can be really costly. I don’t think it should be a luxury that only some can afford. So it inspired me to set-up my own Facebook group. Because it should be accessible to all.

It’s an idea I have had cooking for a while, but following a conversation with some friends I have made through the self-love movement, now seems like as good a time as any.

So, “Project You. A year to mindfulness, self-love and fulfilment” launches on 2nd January but is already open for members. If you fancy joining, or just want some more info just click here.

The plan is to add new content weekly. It won’t be a massive amount of work – I want it to fit into people’s everyday lives.

But for now, watch this space!