Two years and counting

Two years ago today, I was diagnosed with relapsing remitting MS. At the time, this blog was my saviour. Being able to talk about how I was feeling and what I was going through was extremely cathartic and I couldn’t have needed it more. But I feel like I’ve lost my way with it recently. I’m finding myself writing only when I’ve been feeling frustrated and needed an outlet and that’s not what I want this to be about.

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So I’ve been working on what I want this blog to be and how I can take it forward over the next few months and beyond. I’ve got some ideas, but I also want to know from you what you want as a reader.

I’m still yet to write about my experiences at the MS Sessions in Bucharest which was back in October which is ages ago now! But there’s so many important things I want to say about it and there’s so much that I’ve done following it regarding how I want to use my diagnosis in a positive way. Something that I was considering probably a year ago was interviewing other people with MS for their story and writing it here, but I’ve learned some skills at work with editing audio and I’m toying with the idea of podcasts amongst other things. I do however also want to bear in mind not starting something that I can’t keep up with or ending up burning myself out. I can’t do everything!!!

Anyway – focusing on two years with MS, I still stand by what I said this time last year. It’s one of the best things that’s ever happened to me. Sure, I don’t say that on my bad days, but from a big picture perspective, I wouldn’t be who I now am without it. And for the last year, I’ve been the happiest and most content I’ve ever been.

It feels important to talk about how I feel about Lemtrada, 18 months on from my first round. I feel like the first round wiped me out and I’ve not been the same since. Let me explain. Even after I was diagnosed with MS, I felt no different to how I did before. I was exactly the same. I didn’t ache unless I’d been in the gym, I was still tired all the time (but just in the sense that I needed early nights and then I’d be ok). I had the occasional brain foggy day which I could usually put down to a bad night’s sleep. It wasn’t like I was diagnosed and then all of a sudden I had all this stuff wrong with me all the time.

Before I go on, it’s important for me to point out that I don’t regret my choice to have Lemtrada. It was the best option based on the options presented to me and the key thing is, as far as I am aware, I haven’t had a relapse.

But what I do feel is this. I’ve never truly recovered from it. Now I get it. Maybe I’m six months off of recovering from it and feeling better. It wasn’t like I was diagnosed with MS and all of a sudden I felt rubbish all the time. That would be purely psychological because until that point I was more or less ok. No. I feel like since the first round of Lemtrada I’m constantly battling symptoms. I’ll either be tired, aching/in pain or my cognition will be a mess. Thankfully, never all three at once. Some people call them pseudo relapses, other people call them a flare up. Whatever they are, I feel like I’m in a constant state of it.

Fortunately, nothing is debilitating and that’s why I see myself as lucky. The aching is never horrendous pain that I can’t live with. It affects me psychologically more than anything on some days when it’s a little worse than usual and I feel like it’s never going to let up and that this is forever.

But when I can shift my perspective it changes. I’ve not (knowingly) had a relapse in all the time I’ve been officially diagnosed with MS. And actually never feeling more than 75% is a small price to pay if it’s (so far), halted my progression. So to anyone who is considering Lemtrada, there’s no way I would tell you not to have it.

God. That felt depressing and like a whinge. Exactly what I’m trying to avoid! I feel like a quick bit of honesty about Lemtrada was needed though. I’ve not talked about it for ages and I’m finding myself increasingly thinking about the fact that I’ve not had a relapse but I currently feel ten times worse than I did two years ago. And there might be someone out there wondering the exact same thing on a personal level!

Moving on, let’s talk positive. In Bucharest, I met the lovely Jessie Ace. She runs the Disabled to Enabled Warrior podcast and she asked me to be on it. We recorded the interview back in December and my episode comes out next week! I will of course be sharing the life out of it and it would mean a lot for you to have a listen yourself. I talk diagnosis journey, how I’m involved with my local MS Centre and the benefits of Reiki with MS.

I’ve also been keeping busy with Wigan MS Therapy Centre and have started to open the centre up a couple of times a month so that young people and full time workers can access the facilities and support group that comes with going to those type of centres. It’s very early days at the moment and I have a really clear vision for it. Obviously, after just one meeting it doesn’t yet meet that vision at all.ย  Rome wasn’t built in a day and it will grow into exactly what it needs to be in time though.

Following my starting this, I’m really happy to have been put forward to join the committee for the centre and am now the Young MS coordinator. More on that as the role evolves ๐Ÿ™‚

Blood tests are still being done monthly and all the results are coming back ok. No sign of thyroid issues or any of the other associated risks with Lemtrada. I think I’m on number 19 of what will be roughly 60 tests now. They’re flying by! I’m coming up to my annual check up with my consultant too. That’s on Friday 6th March and I’ll be getting results of the MRI I had back in September at that point and will hopefully get good news about how Lemtrada is working for me.

And that’s all for now. I needed to do a catch-up to get me back to blogging consistently and I’m hoping to talk more about things I’ve mentioned above, along with some other stuff throughout this year.

But for now, I’m gonna go and celebrate my two year anniversary with a brew and a nap!

Hungover?

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.

Back in my late teens/early 20s when I’d be out at least four nights of the week. I had so much energy and suffered from horrendous FOMO so I was ALWAYS out!

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?

I need to get back to the gym. It’s a “hangover” I’m willing to have because the long term benefit outweighs any short term pain.

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?

Wrong.

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.

Not unlike a hangover ๐Ÿ˜‰

“Yeah I’m fine.”

My lovely Mum and Dad have been up this weekend to see Dave and I in our new home. It’s been a gorgeous weekend and I was devastated to see them go on Monday. I’ve been doing this for ten years nearly and it never gets easier.

The first thing to do on their visit, was to introduce my boxer, Poppy, to mum and dad’s Schnoodle, Reg. We did this by introducing them on the neutral territory of the water park a couple of minutes walk down the road from me. There’s a couple of big reservoirs you can walk round. It’s really lovely and lots of people walk their pooch there.

My main girl, Poppy

Anyway, I digress. We took them on a pretty big walk around them (which I rarely do – it tends to be Dave’s job). Mum and Dad both commented how surprised they were at how far I managed to walk. Roughly a mile. I think they were just as surprised when I told them that pretty much every bone and muscle in the lower half of my body was in pain. But there’s nothing you can do. You’ve just got to get on with it.

That’s the thing about invisible illness. The only thing that isn’t invisible sometimes is the brave face you put on. I only ever admit how I’m feeling when someone close to me asks me like they actually want to know. Anyone else will simply get the stock “yeah I’m fine” response.

It’s a difficult balance to strike. You don’t want to go through life being miserable about the pain you’re going through and constantly going on about it. You don’t want to inflict your troubles on everyone else. They’re your problems, not everyone else’s, after all. But you also want people to see and understand that sometimes you need a really simple adjustment to make your life easier. Sometimes that adjustment is as simple as an acknowledgement that you’re finding life a bit hard.

Because it’s a tricky one to get right, many MSers end up on the side of permanently pretending that everything is “just fine” but having this internal struggle and frustration that “nobody gets that things are a bit harder for me”. Then they still won’t speak up and we’re all just too damn proud to ask for help. Or we genuinely believe we don’t need it.

As I’ve already said, as a general rule, Dave does the Poppy walking because I find it so hard. But as he was at work, I really didn’t have much choice on Friday. And let’s just say I’m still paying for it now.

This isn’t a tale of “woe is me”. This is a tale of a girl that was so bloody desperate for the temperature to cool down because she was sweating constantly, she’d forgotten how much pain the cold caused her. It’s a tale of a girl who needs to learn to be a bit more honest when she’s feeling a bit shit.

It’s not unbearable pain – I can keep going through it on the odd occasion there’s no alternative. But it really is enough to get me down. And I’m starting to feel a bit fed up of it all.

But for now, I’m practicing gratitude where I can. It does tend to distract from the pain slightly, as does writing this blog. I’m throwing myself into reading excessively. I’m napping when I need to and generally trying to slow down a little because it’s been a whirlwind six weeks.

When the mind says “yes” but the body says “no”…

It’s been ages since I’ve written and I guess I just haven’t been feeling all that inspired to write. Having said that, I’ve got lots of ideas following my recent, amazing trip to Bucharest for the MS Sessions (more on that in a blog in the VERY near future).

But today, I want to talk about the mind/body link. Because today, mine are totally not on the same page, and haven’t been for the last month or so.

Some of you reading this will know that Dave and I completed on our first home just over three weeks ago. And it’s amazing. I truly, could not be happier.* But my word, isn’t moving exhausting? There’s been a never ending stream of flat pack, boxes, admin, decorating and just “stuff to do”. Throw a trip to Bucharest in the middle of it all and you end up with one exhausted MSer.

Home ๐Ÿ™‚

I try to slow down, but my brain is constantly thinking of the (what seems like) 1,001 things that I need to do. Add to that, I’ve been crazy busy at work this week and I’m just feeling a little overwhelmed. I’m not living in the present – I’m constantly looking at the next task.

Let’s back track a second.

The day after I got back from Bucharest, Dave and I headed out to do a food shop. And for the first time I felt like my disability wasn’t invisible anymore. I was walking along with stiff legs. My knees just wouldn’t bend. My balance was way off. I’d gotten out of bed that morning and had fallen straight back in.

My first thought was “shit, am I having a relapse?” A couple of weeks on and I’m almost certain that I’m not. I’m just bloody exhausted. BUT I WON’T SLOW DOWN!

I’ve got fellow MSers left, right and centre telling me to “slow the hell down” but I’m not doing it.

And now I find myself lying flat on the bed with every bone and muscle in the lower half of my body aching. All comprehension and reasoning in my brain is gone. Ask my a question and I have no idea what the answer is.

It’s my own fault. I insisted on going out and doing a food shop today. I know, I know, but Lidl don’t deliver and they’re WAY more cheaper. By the time I got home I was physically exhausted. My legs hurt, my hips hurt and my feet hurt. I wanted to cry in pain. I did for about five minutes but got in bed with Pops (my dog) and we had a nap.

The second I woke up (feeling much better), I jumped up and I’m doing all sorts of crap that really does not need to be done yet. And now I’m back in bed in pain again. I know. I’m an idiot.

The thing is, sometimes I don’t feel mentally exhausted. I have so much clarity and I feel like I can take on the world. And I’ll just keep on pushing through the pain to get the job done. I need someone to tell me to stop. Which Dave did eventually do today. After I got up and I started trying to unpack the last boxes, he walks in like “what on earth are you doing?!” and promptly tells me to go and put my feet up.

Thing is, when I don’t feel tired, it’s tough to stop me. I physically find it hard to just sit and do nothing. I get restless. I’ll keep on going until the pain cripples me and someone tells me to stop being a hero and sit down.

A friend and fellow MSer, Ilise just sent me this and it is so appropriate.

Really, what I need to do is learn to accept that almost everything really can wait until tomorrow. I don’t have to constantly live “getting shit done” and at 100mph. And let’s face it, the only person beating me up when it’s not getting done, is me.

*That’s a lie. I’d be happier if the used tea bags actually made their way to the bin and if he bought 3ply loo roll and not 2, but I can just about live with it ๐Ÿ˜‚

Autumn.

Today is officially the first day of Autumn. Many of you know that I’m just not a lover of the heat so I’m relieved to welcome the cooler weather. The heat gives me brain fog, I sweat buckets and generally just find functioning tough.

Pumpkin Spice Latte season is upon us!

Having said that, Poppy’s play date yesterday morning was freezing and I’m already feeling pain in my left thigh. If it’s not one thing, it’s the other. What a nightmare!

Generally I’m pretty good though. I went to see my GP on Friday about coming off Duloxetine, which I’m taking for both my mood and for neuropathic pain. I just don’t think it’s doing much for me. Or rather, it’s more what additional things am I putting up with as a side effect, and does what the drug actually do for me outweigh that. And I’m just not sure.

So I’m weaning myself off by taking one every other day. Doctor’s orders.

We’re still waiting on a completion date for our house at the moment too and that’s causing all kinds of stress and frustration. But it feels like a fresh start in so many ways. With this in mind, I’m planning on finally reading my “Overcoming MS” book as I feel like I’m now in the right frame of mind for it. I’ve briefly talked about OMS before. It’s a seven step programme which can help mitigate MS. I generally feel that the word overcoming is a bit misleading. It doesn’t cure you from it. You don’t really “overcome” it. But you can do everything in your power to change your diet/lifestyle to reduce the likelihood of further relapses and to help your mental health and general wellbeing.

It was initially that that made me consider going Pescatarian last year. I dabbled for a bit but I’m pleased to say I haven’t eaten meat since Christmas Day 2018 now! It’s funny, because actually “my health” wasn’t a strong enough reason “why” for me. But somewhere along the line, ethics kicked in and I’m not even tempted by meat anymore.

Anyway, that was a bit of a digression (not like me!) but my point is, I think my transition to the OMS diet will be a lot easier now that I’ve already changed the biggest hurdle: not eating meat.

Another part of OMS is having a daily meditation practice. It recommends 30 minutes a day. And when you think that’s tough to fit in, think about how much time you’ve wasted faffing about on Facebook (I know what you’re thinking. I’m a right one to talk!) But honestly. If you want it enough, you’ll find the time. With this in mind, I’m going to follow the OMS September meditation challenge which you can find here. I’m pretty sure the actual programme isn’t exclusive to MSers so if you’ve been thinking about meditation, join in with me!

In a funk.

I’m really scared. Scared for the future. I’m going against all my rules feeling like this. I tend to prefer to not dwell on whatย might happen with the progression of my MS. Because that’s just it. It only ‘might’ happen. There’s just as much a chance that everything will be ok. Which is why I see little point in wasting time worrying about it. That isn’t effective 100% of the time though. Like now for instance.

I’m not really sure what’s triggered it. I returned to work last Monday after six weeks off following my second round of Lemtrada and it was ok. As I’m on a phased return, I worked four hour days last week, today I managed five hours and tomorrow I’m going to try for six. And for the most part, since about two weeks ago I’ve been feeling considerably better than I usually do.

This weather is not helping at all though. Yesterday, I felt terrible. And all I could think about was the fact that I really needed to clean my bath. But I just didn’t have the energy. I could barely stand up for 20 seconds without feeling like I needed to sit down again. And still….”the bath needs cleaning Jo,” said that little voice in my head. All I could think about was that just for once, I’d like my whole bathroom to be clean at the same time. Not just the toilet, or not just the sink, or not just the bath.

But I left it. I just couldn’t do it.

Today. I’ve been into work and had a good day. And although I’ve had a bit of an upset tummy since I got home (this happened last year – damn immune system. It literally reacts to the slightest thing) I’ve been full of energy. To the point that I’ve done a load of washing, changed my sheets, vacuumed and guess what? Cleaned the bathroom! THE WHOLE BATHROOM! I’m sat in my bed now in an attempt to recover from that mass expenditure of energy, but I felt good whilst I was doing it, so I don’t really regret it!

Dave and I are in the process of buying our first home at the moment and it’s really stressful waiting for a completion date. But we’re having ALL the grown-up conversations in the meantime. The current debate is over having, or not having a cleaner. Because I can’t even begin to explain how knackering cleaning that damn bathroom is. And I can’t just wait for a random day where I have energy like I do today. It could be months before this happens again! And actually, even if I do have the energy levels for it, I’d rather use it on going out for a nice walk or on some other quality time with Dave and Poppy.

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ย I mean, wouldn’t you rather hang out with these two than clean a bathroom?

It’s conversations like this that are making me fear for the future. I don’t know if it’s the very real responsibility of having a mortgage and desperately trying to find an insurer that will give me a half decent quote on life insurance (*NEWSFLASH*: getting a decent quote with MS – not easy. And don’t even bother with critical illness when you’re already considered critically ill). It could equally be that I read a story about a 46 year old woman who is living in a care home with residents that are mostly in their 80’s and living with dementia*. The system has totally failed her. It’s heartbreaking. She didn’t inflict MS on herself. She didn’t chose to have it. I know that life isn’t fair, but nobody deserves to live how she is living. And it just seems to have hit me that that might become my reality and it scares the living daylights out of me.

I know that right now I’m in a little funk that’s completely normal when you have a degenerative condition such as MS. In a matter of time, whether it’s days or weeks, I’ll snap out of it and start living in the present again. But sometimes I just need to let this emotion come out, rather than bury my head in the sand. The trick is remembering to stand back up and march on.

I’m ok. I really am. On a rational level I know that this is just something I need to go through, but I also know that there’s light on the other side and it’ll be ok.

 

*I didn’t go looking for this story. I tend to avoid it because I know that half the time the media only tells half a story anyway and is meant to sensationalise and make us all worry and fear everything. This was posted in an MS Facebook group though and I guess curiosity got the better of me.

Purpose is the best medicine…

I’m heading back to work tomorrow. Given the rocky ride in recovery from Lemtrada this time around, I’m surprised. But once the rash finally calmed down I felt the best I have since having the treatment. And although I’ve loved reading excessively, now seems as good a time as any to get back to whatever my version of normal is. And I was only half joking when I told my manager I wanted to come back to work because air-conditioning. Seriously. I’ve been hot for about three weeks and can’t seem to cool down. The recent record breaking highs haven’t helped with that in the slightest!

In all honesty, the reason I knew that I was ready to go back to work is that I felt called to start sending distance Reiki again to friends in need. And that brings me to the point of my blog.

Purpose.

Having a chronic illness means you’re all too aware of one thing. A cure ain’t rocking up anytime soon. So that means unless some genius comes up with one, you’ve got this forever. It’s irrelevant whether your disease gets worse through progression, or if it’s simply subject to flare ups, it’s a nasty uncertainty to live with.

There are two choices you can make about that uncertainty. You can sit and wallow and wait for the next relapse, flare up or new symptom to appear. Or you can get on with life. Distract yourself from that unclear future. Live in the present. Define your purpose.

I can honestly say that when I found Reiki, I’d never felt better. And in so many ways, that was absolutely because of the healing energy. But equally, it was because I had found a distraction, which in turn became a passion and purpose. And although I haven’t had the energy to be sending healing to myself, never mind others whilst I’ve been recovering, I’ve found that escapism in a book has been the ultimate tonic when I’ve been unbearably itchy.

You know what? We all have a right to whinge and wallow when something shitty happens. It’s healthy. But what isn’t, is if you can’t drag yourself back out of the place. And finding a hobby, passion or purpose absolute helps in combatting that.