Tag: symptoms

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 πŸ˜‰

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 πŸ™‚

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 πŸ˜‚

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.

A week in the life of an MSer – Monday

As March is MS awareness month, I thought I’d write a series on a week in the life of an MSer. I’ll write everyday but I might not get them posted everyday but I’ll do my best!

Enjoy!

6.40am Wake Up
Although I feel groggy, there’s no aches this morning which is a relief as my ankle has been giving me quite a bit of hassle over the last few weeks.

8.02am – Arrive at work
Get into work and log on. Catch up with a couple of colleagues about how my weekend was. We just slept a lot this weekend which was much needed!

9.30am – Toilet Trip
Luckily I’m like clockwork in the toilet department. Because of certain nerves that are damaged, I don’t usually realise I need to go for a number two until it’s VERY short notice πŸ™ˆ

11am – I need something to do
I’ve run out of stuff to do. And this is when my fatigue really sets in. Even though I’ve slept all weekend I’m feeling tired. Fatigue always gets worse when I haven’t got stuff to distract me from it.

Midday – Found stuff to do
I’ve managed to find something to keep me occupied and I’m feeling better for it. It’s a bit early for dinner though. I work longer days so although colleagues are going for lunch, I’ll probably leave it another hour or so

1pm – Lunch
I take my lunch on my own – the time on my own helps me recharge my batteries. I tend to switch off with a book for half an hour. I never used to take my dinner and I was really struggling with fatigue. So I’m now trying to behave myself and actually take my dinner break!

4.30pm – Final Stretch
I always used to have finished work by now, but I’ve changed my shift pattern this year. I now work four longer days with a Wednesday off. It’s really working for me, having that rest in the middle

6pm – Finished!
Today has been a good day but it’s not done yet. This evening I’m heading over to an Essential Oil and Chakra course. I’ll grab food on the go.

9.30pm – Finally home
It’s been a really long day so I’m straight in my pyjamas with my feet up catching up on MasterChef! I’m starting to feel the tingling a bit more prominent in my feet and have a bit of restless legs. This is totally normal when I’ve been really busy all day. No pain though. I’ll also take 4000iu of Vitamin D.

10.40pm – Sleep meditation
My “sunrise/sunset” alarm clock goes off at 10.45pm so it’s time for a quick 5 minute meditation which I can guarantee will send me to sleep!

“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. 

MS and Depression.

A few weeks ago, it came to my attention that I’m not as ok as I thought I was.

Dave came upstairs to find me curled up in bed crying my eyes out. I always say that he’s the kind of guy that you want around in a crisis, and he was true to form this time. He climbed into bed with me and gave me a big hug, letting me cry it out.

The conversation when I finally calmed down went a little like this:

Dave: “So, what’s up?”

Me: “This. Everything. Why me. It’s not fair. Life sucks. All I do is work and sleep. I don’t want to live like this. And I’ve not actually had a relapse since I found out I was diagnosed. I wish I was still going on, blissfully unaware, because I wouldn’t be feeling like this.”

Dave: “Your body has been through loads this year Joey. We knew it would be tough but it will be worth it in the long run. It’ll be ok.”

Me: “It doesn’t change the fact that life is so boring. I’ve lost my zest for life and I don’t know who I am anymore.”

Dave: “It’s ok. I don’t mind. We’ll be ok.”

Honestly. Always the voice of reason and I don’t know where I would be without him. He’s absolutely right. What’s really getting me down is that I’ve been using lots of annual leave to just sleep. And my weekends are just spent sleeping, apart from running a couple of errands. I sleep, and I work. Not the life I signed up for, and I imagine it’s certainly not the relationship that Dave signed up for. There’s a lot of guilt around the impact on him.

After spending some time reflecting, I’ve come up with some options for how I can make this work as we go into the New Year, but right now, I don’t know the feasibility of them, so watch this space for an update on that.

Other indications that I’m not as alright as I could be is that I have neglected my blog. I just haven’t felt up to writing. A lack of creativity is definitely apparent. I’ve been spending a lot of time on my own. I’m the kind of person that as soon as you text me, I’ll respond within minutes, but I’ve just not been up for getting into conversation. Generally a supportive friend, and happy to coach people close to me through difficult times and give advice, I just don’t feel up for taking on other people’s problems. I can’t be bothered to engage in trivial conversation. I prefer silence. If I’m honest, I’ve just not been feeling like me. I’m spaced out and so tired all the time. Dave’s working away a lot which is making me feel sad because I miss him, but it’s also giving me much needed space on my own which is good for my soul. Apart from the people closest to me, I’m just not feeling very “people-y” right now. It’s nothing personal. It’s just what I’m going through.

On paper, I’ve got all the symptoms of depression.

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Depression is common in people with MS. The first (and perhaps obvious) reason is that dealing with symptoms can really get you down. When people ask how you are you have options. Just gloss over how you’re feeling, in spite of feeling physically awful. Or you can be honest. Either option messes with your head. However you approach it you end up feeling rubbish. If I choose to hide it, nobody actually knows that I’m struggling. But then I’m mad that they’re not being mindful of how things are for me that day (yes, yes I know. Not their fault. I should have been honest.) But if I tell the truth, I risk sounding like a broken record. Because I’m always dealing with something in varying degrees of severity. Even on the good days. I honestly feel like I can’t win!

The second reason that people with MS suffer with depression is because the nerves relating to mood are damaged and sending the wrong signals to your brain. This ends up making you feel depressed for no apparent reason. It can do with this all sorts of moods, not just depression and people with MS are prone to dramatic and unexplained mood swings.

When I last saw Danny (my MS nurse), he gave me the details for an MS Counsellor. Through talking, he suggested that perhaps I’d not gone through a grieving process yet. I need to grieve the health that I’ve lost. Maybe future possibilities too. At the time, I didn’t really agree, but just a few weeks later and I’ve done a complete U-Turn on that. I definitely need to do some work on coming to terms with the past year. Whilst I regularly think of so many positives that MS has given me, I can’t help but think that they’re distraction techniques. So much of my positive approach to what I have been through has been about how I’ve distracted myself from tackling this head on. And maybe a little bit of denial. For a long time, it felt surreal. It didn’t really hit me. I’m thinking about it less now, but when I do think about it, I’m a cross between disbelief and distraught.

So what’s next for me? The medication I’m on for neuropathic pain, is also an anti-depressant. I’ve been in touch with the MS Counsellor and will also explore options through the employee assistance programme at work. I’m finally ready to work through accepting my condition.

 

The come down.

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!

One of the books I have recently finished reading. I can highly recommend it. It was brilliant!

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.

Tiredness. Dodgy Gut. Flu-like. Anxiety. Unmanageable body temperature. Unreliable legs. Itchy Scalp.

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.

Maybe we can all learn a thing or two from that.

Coffee and Cake is always wondeful therapy!