We’ve all been there. Whilst thinking we’re on death’s door from all the sambucca shots last night we’ve sworn we will NEVER drink again. But within a few days it’s forgotten and we’re making next weekends plans.
Granted as we settle down, those night’s out are probably less frequent, but the bottom line is that the majority of us are still willing to have a hangover to end all hangovers in exchange for an awesome night out.
And why wouldn’t we? I think they call that living!
So how is this relevant to MS?
Well, I have to make decisions similar to this everyday. Earlier today, I was explaining to a friend how you often feel that when you make a decision to walk the dog, go to the gym, dance around your kitchen or indeed go out partying or drinking, people are judging whether you really are struggling or not. Because surely if you can do that, you’re fine, aren’t you? Right?
It’s a big decision, whether you do those things or not. Going to the gym is something you might do, not because it doesn’t cause you pain and is easy, but because you know that if you don’t, your disability will get a hell of a lot worse.
You might decide to walk the dog because the dog needs to be walked. It’s unfair not to.
You might dance around your kitchen because you used to love dancing and your condition has robbed you of being able to do it for more than five minutes anywhere else. And you might still go out because you want to retain as much normality as possible, you’re still human and enjoy socialising and if you don’t, chronic illness can be really bloody lonely.
You make those judgements for your own sanity and because you’re not going to let your condition rob you of living. You decide to do it because even though you know you might pay for it for days afterwards, what it will do for your soul, far outweighs the pain and fatigue that will come after it. It’s a conscious choice to have fun knowing full well what the consequences are.
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!
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!
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.
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.
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!
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.
It’s getting to that time of year again when you start to reflect on the last 12 months. It was no exception at this month’s Red Tent on Tuesday. For those unfamiliar, Red Tent is a women’s gathering on or around the New Moon. It’s … Continue reading A Thank You Letter to MS
The cloud is shrinking. Over the last couple of weeks, I’ve felt great. I’m back in the gym and working hard. As long as I keep it static, I’m ok. Too long on the treadmill and that ankle pain flares up. I still have other aches the day after, and they’re not your typical gym related aches, but they’re MY gym related aches. And I’m ok with them.
I mentioned in my last blog that it is now my time to stop dwelling on what’s happened to me, and just get on with life. This week is National Inclusion Week (in the UK) and in the run up to it, at work, there have been requests for people to film segments of video – just a couple of seconds holding a piece of paper saying their name and a fact about themselves. The idea is that we’re celebrating how diverse we are as a workforce. Your sign didn’t have to specifically relate to a protected characteristic (i.e. a disability, sexual preference, race, religion etc). It could be something that you do in your spare time.
I really think that this is a great initiative and I was keen to participate. I was happy to wave the flag for MS and invisible chronic conditions. For one reason or another though, I missed the deadline.
A week or two later, I was approached (along with others) about recording one of these videos referencing my MS (or other protected characteristics in the case of others). And I chose not to do it.
You might be asking yourself, why would I refuse? I’ve been really vocal and open about my journey. I’ve talked about raising awareness. I want people to have a better understanding and to not feel shy about asking me questions. Why on earth would I pass up the opportunity?
It’s simple really.
I don’t want MS to define me.
I want my #ThisIsMe statement to be something completely unrelated. I want to be the girl that people describe as “you know, the one from Essex” like I’m pretty sure has been the case since moving from down south to up north 8 years ago. Not “you know, the one that’s got MS.”
Reading back my last couple of posts have made me feel really sad. I’ve obviously not been in the greatest place in recent weeks. In spite of the amazing self love summit that I attended which really did leave me buzzing for at least a week after, things just haven’t felt right for me.
Tuesday was a bit of a turning point for me though. I had my second blood test done and it presented me with a bit of an opportunity to just “offload” a little. And I am so glad that I did. Firstly, being asked to list all of your current symptoms was quite humbling. A list of five, which aren’t really that big a deal certainly put some perspective on things. The nurse that I saw told me that there was a tablet she could ask my GP to prescribe for me that would tackle the pain in my ankle (which hasn’t let up), the itchy scalp, my up and down temperature and the thigh pain. Possibly even help to lift my mood a little.
It feels weird to accept medication. I rarely even reach for the pain killers when I have a headache, but if it can help all of those things, I’m game. Although I’m still awaiting confirmation that my GP knows to prescribe it to me, it feels like a weight off my shoulders just to know that there’s something that can give me a little relief.
Honestly though, my mind has been heading into dark places over the last week or two. It’s not being back at work. I’m happy to be back actually. No, it’s about the pain in my ankle. I recall, somewhere some years ago a similar pain. Back then, of course I didn’t know it was MS and even now I’m only just making the connection. I probably put it down to dancing the night away in cheap high heels. You know it’s no good for you. I don’t remember it ever being this painful and unrelenting though. Certainly not enough to give me an occasional limp.
I was warned that post Lemtrada, because my body has had a bit of a battering and it will take quite some time to recover, some of my old symptoms would resurface. What nobody warned me of, was that there was a chance they would come back worse than when I first had them. But that seems to be a common occurrence. I didn’t know that. Lemtrada has also made me all kinds of irrational, so obviously I started to fear all sorts. As it’s taken so long to diagnose my MS I wondered, is there a chance it’s been misdiagnosed as relapsing, and is actually secondary progressive? I feel more or less comforted that this is highly unlikely, having spoken to others that have experienced worse symptoms than the original relapse.
On top of all of that, the irrational mood? The spontaneous crying? Generally feeling pretty miserable? All comes with the territory but I’m assured, it does eventually lift.
And I’ll tell you what’s helping my mood lift. Autumn is definitely on its way! I could practically smell it yesterday morning. The slight chill in the air, dew on the cars and the sun a lot lower. All that’s missing is a pumpkin spice latte from Starbucks!
Thinking about how much I love Autumn, made me start reflecting on what else I love. What else fills me up? What makes my soul happy? What is it that I need from a self-care point of view? I’ve accepted that for the next couple of years things are going to be up and down. That sounds defeatist, but I see it as a pragmatic approach. I’m going to do everything in my power to keep a smile on my face and make myself feel good.
I love writing, so starting this blog has been a huge thing to keep me happy and I have some great ideas of how I can branch out with it. I’m really keen to share the stories of other MSers. I tell you time and time again that it affects us all differently, so coming soon, I plan on sharing interviews with others affected by MS.
Through this digital age we find ourselves in, I have realised that I no longer read anymore. When I was a kid, in the school holidays I’d be at the library every other day getting a new haul. I’d complete the summer reading challenge several times over. But now there’s always a Netflix series to watch, a social media notification to respond to or my lives have refilled on whatever mindless game I’m playing. So less screen time for me, in order to give me more time to get lost in a book, which is all I ever did before those distractions existed.
I’m contemplating participating in “Scroll free September”, but depriving myself seems like an extreme thing to do. I’ve realised that I’m so all or nothing about everything and because of that, it always ends up being unsustainable. I end up trying to do something positive in my life and it actually ends up making me unhappy, stressed or left feeling like a failure. What I’d rather do is set some principles around how I use my phone. I’m thinking along the lines of “no phones after 9pm”. That kind of thing. Restricting Netflix binges to a couple of episodes a night. Nobody likes to admit it, but it’s only when you really take a critical eye to yourself that you see how addicted you are to your smartphone. I want my smart phone to add to my life and be useful. Not something that takes over my life.
I LOVE music. Any music. But I’ve realised how much calmer and in tune with myself I am when I listen to classical piano. More of that please.
I love being crafty, and I love being warm. So I’m going to finish my patchwork blanket. I’m so close to it being completed so that has got to be an absolute priority.
And finally, I love learning. I’ve had a couple of Udemy courses sat on the back burner for a while, so I’m going to pick those up once I’ve finished my blanket. I need to get better at doing one thing at a time and following through.
But most of all, I need to get better at doing more of the things that make me happy.