Category: ms

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 🙂

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 😂

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 what 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.

rpt
 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.

MS Sessions

So, I’ve just done something exciting. I’ve just submitted an application for the MS Sessions in Bucharest (capital of Romania) at the end of October this year. Billed as a festival for people with MS, it’s a two day event for young MSers across Europe. (YOUNG!!! I thought I’d said bye that description once I hit my 30s. I feel like I’m not young, but I’m not middle aged either). Anyway, as usual I’ve digressed. The two days are filled with talks from leading experts but is also a networking event for people under 40 with MS. The idea is that they equip you with tools to be able to go back home and take it back to your local MS community, or start one up if there isn’t one.

It’s all funded as well if your application is successful. Today was the closing date (I only found out about it from another MS buddy I’ve met through online communities so cutting it fine!) and I’ll find out if I have been successful during the first week of August.

Anyway, in other news, I’m still battling a rash and I’m still absolutely shattered if I try to do too much. But I am in brighter spirits again despite having three cold showers or baths a day to ease the itch! Despite my trip to the doctors last week getting me a different anti-histamine to try, it doesn’t seem to have done anything. I do have some Menthol Cream though which is quite honestly amazing!

My team at work sent me flowers last week so on a day I was feeling extra sorry for myself, it put a massive smile on my face. They look beautiful today as they’re all starting to bloom.

screenshot_20190715_2149406488683386674969319.jpg

I’ve also been thinking about where to take this blog next. I’m thinking about a series which talks about the different symptoms in more detail and explain how it impacts me daily, but also get feedback from other MSers too.

If there are other MSers out there that would be willing to share their story which I’ll do “interview style” on here that would be awesome too. At the moment, for the most part people are just getting my take on what MS is like. We call it a snowflake disease (no, not because we’re pathetic and delicate!) because no two people experience MS in the exact same way. So it’d be great if others would be up for having a chat. If yes, just drop me a message in the comments.

So, for now, watch this space for updates on whether I’m successful in my application for the sessions, and the direction my blog is going next!

 

 

 

Just when you think things are getting better…

It’s been a couple of weeks since I posted about my experience of Lemtrada Round 2 and now seemed like a good time to check in. Mostly because I’m sat in the doctors waiting room (again) with little else to do.

So last time I wrote, I ‘probably’ had cellulitis and the rash wasn’t abating. Since then I’ve had a course of penicillin which seems to have done the trick on the cellulitis.

Thing was, I was taking 25 tablets a day and quite frankly the thought of another tablet made me want to throw up. So despite the rash, I decided that just for a day I’d knock the anti-histamine and paracetamol on the head. As it turned out, the next day the rash did finally subside so I didn’t bother taking them anymore after that.

On Monday however, my itchy scalp (remember that from last year?) started, so I figured I’d just take another one of the anti-histamines that I was prescribed in hospital (chlorophenamine, which is basically piriton). Within minutes my skin flared up. I broke out in hives almost all over my body. The very same rash I’d had that I was trying to combat.

So the medication I’d been taking to beat the rash was giving it to me. Oh the irony.

Much to the amusement of many of my friends on Facebook, after a bit of googling for home remedies on Tuesday morning, I had a bath in porridge oats. It has anti-inflammatory properties and much to my surprise really helped. Once I was out I slathered myself in what was quite frankly an offensive amount of aloe vera gel and ended up spending the majority of the day sleeping.

By Wednesday, it hadn’t shifted. I popped into a local Pharmacy which suggested trying a different anti-histamine but nothing has changed. If anything it’s got worse.

Overnight has been horrendous. I’ve never sweat or itched more. It’s unbearable and I’ve now given up on waiting for it to ease on its own and am now sat waiting to see the doc.

It’s definitely not been easy this time around.

Lemtrada: Round 2

“Have Lemtrada” they said.

“It’ll make everything better!” they said.

Right now, I think “they’re” big fat liars.

Today has resulted in a full scale pity party. I feel terrible. I’m pissed off that I’ve got MS, I’m pissed off that I’ve had Lemtrada, I’m pissed off that I haven’t stopped feeling lousy for two weeks nearly now. I’m just pissed off.

So, since my last blog last Wednesday, what’s been going on? I was discharged from hospital by about 5pm. I felt pretty chirpy and just generally ok. Legs felt really whoozy though. If you remember, last year, I’d managed to get quite a bit of time off the ward so I’d managed to retain the use of my legs a lot more than this year.

I spent the majority of Thursday sleeping and just generally aching but for the most part I was ok. Friday was reasonably ok too – I even managed to go out for a couple of hours.

Saturday saw me at Poppy’s play date for a couple of hours, then sleeping the effort of that off all day. Same for Sunday, minus a playdate.

Jessie, Poppy and Dexter

Sunday night, I headed back to mine and pretty much, all was about as I’d expected.

So far, my experience was mimicking what had happened last year for the most part.

But then Monday happened.

Following a terrible night sleep, I had to stay awake for my Tesco food shop to be delivered. Given the three hours sleep I’d had, this proved difficult. And the temperature really increased. When my shop did arrive, I was the hottest, sweatiest mess I’ve ever been!

The sheer effort of unloading my food shop made me want to throw up, and I found myself horizontal on the ice cold kitchen floor, desperately trying to feel cooler.

Monday night was another night with very little sleep (but that could have been because I stayed up reading a book).

Tuesday was a terrible day. I felt like I’d been hit by a bus. I barely moved all day but when I did I was seeing stars, dealing with waves of nausea and my heart rate spiking from taking three steps. I wasn’t good. I never felt this bad last year.

I was beginning to realise that perhaps I was lucky last year for Round 1 and how much it had affected me. I admitted defeat and got a taxi back to Dave’s. I couldn’t look after myself. Every effort to just made me feel worse, but I have to eat and stay hydrated.

I want to say that Wednesday was a better day. And in many ways, it was. I didn’t feel as sick or weak. But Dave spotted a patch on my arm that didn’t look like the rest of the Lemtrada rash that was slowly taking over my body. I usually like to give a visual representation but you definitely don’t need to see my rash. Think hives.

The short version is I ended up seeing a Doctor, not from my regular surgery as they close on a Wednesday afternoon (coz people don’t get sick on a Wednesday apparently). He said it looked like I had early onset of cellulitis around the site of my cannula. He prescribed me a course of penicillin to add to my already offensive list of medication.

This was just my 5.30pm meds. I’m taking roughly 24 tablets throughout the day at the moment. My usual regular medication is just two tablets.

Overnight, it definitely hasn’t got worse and it’s less red in colour now and more pink.

Today, I’ve just slept. Then woken up eaten and gone back to sleep. But I’ve got a confession. I have also had a proper wobbly today. A real “why me, why MS” angry strop. I cried my eyes out. I try and avoid doing this too often, because for me personally, it’s counter-productive, but some days putting on a so-called brave face just gets too much. And nobody would blame me for it.

I feel so weak for doing it though. I feel like I’m not living up to how people perceive that I’m coping. In life, it feels like crying is seen as weakness. But I truly believe that strength is not in your reaction, but how you recover. So it’s ok to cry and let it all out.

Or it could be the emotional rollercoaster of steroids and I had no control over it.

In short, whatever I thought I knew about going through Lemtrada has completely reversed. Last year I felt under the weather. This year I can barely move with every limb and joint aching. I have a horrendous rash, I’ve ended up with cellulitis and I can’t stop sweating.

However, if you’re reading this, waiting for Round 2 yourself, please don’t let this scare you. All this proves is that this is so different for everyone and there’s no way of predicting how this will go for you. And please remember. There’s a greater good behind all of this. It could be leading you to a day where you don’t even think about the fact that you have MS.