The days you wake up, do a quick body scan and realise that you’re ‘you on your best day,” are truly joyous. The trouble is, it’s a precarious balance. Any minute it could come crashing down.
On your “best day” it’s not abnormal to get giddy about how much you can do and then push your luck just that bit too far. Like I did today. I usually do use my day off in the week to rest and recover but today ended up being busier than I like it to be. I had a couple of places I needed to visit as well as getting my bloods done. The urgency is in part down to being pretty busy this upcoming weekend, and partly knowing I’ll be in hospital 12 days from now. But now I’m paying for it. It’s 6.30 on a Wednesday night and I’m shattered!
I’ve been thinking a lot lately about the fact that I don’t think I’ve had any relapses since I’ve been diagnosed with MS. At least not a debilitating one. Yet I feel like I’ve been feeling progressively worse, physically. As my white blood cells still aren’t quite up to the bottom end of normal, I’ve been assured by a nurse that I can’t possible be having a relapse. So why do I feel so damn terrible?
It’s the aching more than anything. It just doesn’t seem to take a lot to make me feel like I’ve done a couple of rounds with Mike Tyson. And when I say “not a lot” in healthy person terms, it really is nothing. And I don’t know why. Sometimes I wonder if the brain really is so amazing that I DID feel this terrible prior to diagnosis, but in the absence of an explanation, or indeed in fear of it, I just suppressed anything I couldn’t explain.
It seems plausible that perhaps every way that I’m feeling terrible at the moment is something that I’ve experienced before, back when I was blissfully unaware that I was living with MS. But I found a different excuse that was temporary after it vanished. The reason everything is flaring up is that everyday my body is not only existing but it’s fighting off the symptoms and it’s fighting to build my immune system back up. That’s gotta be exhausting. Right?
I just feel like since Lemtrada, I haven’t been quite right. It’s not bad enough to put me off going for my second round. I keep trying to trust the process. That it’s a two year treatment that I’m only halfway through. It goes some way to appease me but then there’s this little niggling thought that there’s something more sinister going on.
I feel so confused that I’ve started to track my symptoms through an app called SymTrac. This doesn’t feel like something I want to use long term though. It’s making me think constantly about what pain I am and am not in. I’m all too aware of how I feel right now, and that’s not good for me.
Any other Lemmies out there with words for advice, reassurance or comfort? Or anyone in the know for that matter.
Many followers to this blog may know that on 11th June it will be a year since I had the first round of Lemtrada. That time has flown. I honestly can’t believe it!
That means I must be due to head in for round two. And I can confirm that on Friday I got the call to tell me I’m due for my second round on 17th June. Nothing like a good bit of notice eh 😉
So two weeks from today, I’ll be packing my bag for this year’s treatment.
A quick reminder of last year’s treatment – I went through five days of infusion based medication. Three days with steroid and two days without. The drug wiped out the part of my immune system that attacks my nerves and causes the demyelination we know as MS.
This year, it differs slightly. I’m only in for three days for the same treatment. I’m not 100% sure if I get less of the drug or if I get more per infusion but I’m sure I’ll find out!
So a short, but sweet update!
It’s a weight off the shoulders. If you’ve read this blog from whilst I was being diagnosed you’ll know I’m a planner and totally hate the unknown or a lack of plan! It’s made me completely irritable and irrational. But hopefully I can start to see past this treatment now, and onto a life where MS is at the bottom of the list of things I think about. And not at the top.
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…
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!
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!
I’m suffering from writer’s block at the moment. I’ve just not really had much to say or write, but I’ve also been enjoying spending my time reading A LOT! I’ve also been starting to read a bit more about Reiki Healing as I’m so excited to share that all being well, I’ll be doing my Level One attunement on the 15th September!
I know that many people who follow my blog are people who want to know what to expect from going through Lemtrada. With this in mind, I thought I’d give a summary of how things have gone for me over the last couple of months. Trying to get a picture from my other blogs probably gives you more of an idea on how my mood has fluctuated more than anything! I’m moving towards a better head space now which means I’m way better positioned to collate my thoughts!
So, where am I eleven weeks on, apart from sat eating a veggie burger with sweet potato fries and suffering from writer’s block?
The intense “MS fatigue” I was suffering in the run up to treatment has more or less lifted. I can’t say that there aren’t days when it’s not there but it had got to the point that I was suffering every single day. I’m still shattered though and sleeping ridiculous amounts. I think this is just because my body is working hard to increase the bit in my blood that Lemtrada wiped out. It’s different to MS fatigue. I actually do feel refreshed when I wake up in the morning and getting ready for the day doesn’t feel like the plight it was becoming. As a result of my exhaustion not being even close to what it was, the Cog Fog isn’t so bad. Sure, words are falling out my head like it’s going out of fashion, but I’m definitely finding it easier to remain present in a conversation.
I can count on less than two hands the symptoms I’ve had to deal with as a result of going through treatment. And most have worn off now. For three weeks after I felt like I was coming down with flu and slept a lot. By five weeks after (just before I was going back to work), I started suffering with a bit of anxiety, but that disappeared by being open about it and having Reiki therapy. I’ve had real issues with stabilising my body temperature, but since the weather has cooled down, I feel loads better. It’s difficult to tell if that’s MS in general, Lemtrada, the fact that it’s been disgustingly hot and we’re ill equipped to deal with it in the UK, or a combination of all three. I suspect the latter. I was struggling with an iffy gut every other day at first, but my stomach of steel seems to slowly be working it’s way back to normal!
Then there was the itchy scalp. This still hasn’t really let up and I’ve tried changing shampoo and all sorts. My hairdresser said he can’t see a rash and my scalp looks in great condition. Whatever it is, the occasional anti-histamine when required seems to keep it under control.
Finally, there’s my legs. This is really hit and miss. Today, I’ve had no bother from the pain in my ankle in spite of the fact that I’ve been dragged round a car boot sale in the pouring rain. On another day however, with no explanation, it’ll reduce me to tears because the pain is so bad. Or the weakness means I can’t face using the stairs. I’ve started parking on the site car park at work which is making a difference to both the comfort levels of my legs, but also in managing my energy levels. I feel at the end of the day like I’ve got enough energy to go to the gym after work. Or at least I would have if I didn’t have the pain in my leg! I really want to get back to the gym actually. It’s getting me down a little at the moment that I’m in too much pain to go. I’m hoping to try going this week though on the basis that I might be surprised by what I can do.But that’s it.
That’s really not a lot is it? Not in the grand scheme of things.
It was getting me down though. To the point that there was a suggestion that maybe I’m depressed. I categorically disagree with this. I’m miserable, sure. I’m not disputing that but do you know what? I have every bloody right to be. I’ve been diagnosed with MS. I challenge you to find someone who wouldn’t feel at least a little bit pissed off!
I think what’s triggered it, is now that I’m through the diagnosis and the treatment, everything has just…stopped I suppose. It’s almost a come down. Not that I was on a high, but I can’t really find the right words to explain it. Things have changed though. Nobody is calling me brave or inspirational anymore so I don’t have to worry about living up to that (I’m ok with this by the way! I’ve said before, it gets kinda annoying because I’m only doing what anyone else would do in my shoes). But life is more or less back to normal now. What that means is it’s time for me to come to terms with everything. I’ve found the trick is just not think about it and to bury my head in the sand but I’m not sure that’s productive. I’m now allowing myself to feel my emotions whether that’s anger, sadness or confusion. A sense of “why me?” This means that emotionally I’m on quite the roller coaster right now. This could be being mistaken for depression.
Just on this point, I’m pretty sure that the place that the suggestion came from was 100% a place of love. I’m grateful for being looked out for like that actually. I’m not dismissing it entirely as depression is a well documented symptom of MS. I just don’t think it’s something I’m suffering from right now. I think I’m just fed up and need to work on my self-care to get me out of that place.
On an unrelated note, someone who didn’t yet know about my diagnosis found out last week. And he gave me the most honest response I’ve heard from anyone. He looked at me and just said “I’m so sorry to hear that Jo. That’s shit innit?” He said the one thing that couldn’t be closer to the truth and he didn’t run scared from it. It was genuinely music to my ears, to get such the response that I got. There was no trying to empathise, and there was no sympathy either. He just said exactly what it is. It just felt so real.
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.
On Wednesday I met with my line manager (who is also a good friend) for coffee to discuss my return to work. I’ve been feeling really anxious about going back. I don’t particularly know why. I’ve had my ups and downs with work over the … Continue reading Return to work