Tag: symptoms

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 🙈

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!

You will not always be strong, but you can be brave.

For reasons that will become clear, this blog post wasn’t an easy write. I’m still not even sure I’ll press the publish button yet. We’ll see.
I’ve been back at work for two weeks now. I’m glad to be back (in spite of the anxiety I was feeling in the run up), though I’m still on my phased return. This is good – I’m definitely knackered by Thursday so not fully committing back to my full time hours yet is definitely something I need. I genuinely feel so blessed that I have such an amazing and understanding employer.

In recent weeks, I’ve been wondering what would happen if I decided that my job wasn’t right for me anymore. This isn’t unusual, ever since my diagnosis, I’ve thought at great length about my career options. What if I chose to go elsewhere? Would I find an employer as understanding, that would look after me as well? Or would I just end up a burden? If I was upfront and honest about having MS when I applied for a role at another organisation, would I end up somehow being shafted before I’d even got my foot in the door? You’d like to think that this stuff doesn’t happen in this day and age, but I’ve worked for the same company for 16 years and it terrifies me thinking about what could happen.

Anyway, you can probably see all this building up to a less than pretty state in my head. 

My head is a fucking jungle.

Honestly, since Friday I’m constantly on the brink of tears. And not because I went into meltdown thinking about my future! I’m fed up of this stupid bloody heat, I want to stop sweating. I have developed the itchiest scalp I’ve ever encountered and I can feel loads of small spots under my hair. And if I walk for more than five minutes, there is a pain in my right ankle that feels like someone is stabbing me with a burning knife. Which if I really deserve a treat, spreads up my entire leg. Yay!

Thing is, unless we’re REALLY close, if you ask me how I am, I’ll probably tell you I’m fine.

If you notice the slight limp I’ve developed on occasion, it’s unlikely I’ll tell you just how sore it is. I’ll probably brush it under the carpet. 

I’ve come to realise, that there’s a lot of pent up anger in me at the moment. That “why me?” anger that so far I’ve only experienced fleetingly, is here in full force. I feel emotionally vulnerable right now. And I think the spontaneous crying is because it helps me to release some of that anger. I feel great after a good cry. It’s like nothing has happened!

Ultimately, right now I’m just really bloody fed up. I’m not feeling very “people-y” and actually, I don’t even feel like slapping on the positive outlook I keep being complimented on.

I feel like the reality of my situation has hit me like a ton of bricks. I keep having to remind myself how much worse things could be. And they really could be. I have nothing terminal. I still have my mobility. I need to gain a little perspective. 

Before I stop writing, I need to share this. It landed in my mailbox this morning, and the timing was just so perfect. 

It 100% sums where my headspace is at right now.

Everyday for the rest of my life.

I really do try to keep this blog positive, but it’s only fair that I talk about my bad days. It wouldn’t be right for me to give this false impression that I breeze through everything to cries of “you’re so strong” or “you’re so positive!”

This evening I have had a complete meltdown. I’ve tried to hold it in but that’s not helpful for me really is it?

Over the last few months every other night or so, particularly if I’ve been on my feet a lot throughout the day, I’ve been getting pain in my left thigh. It’s a burning pain, that I can’t quite describe. It’s not unbearable pain, but it’s certainly unpleasant.  

A couple of paracetamol later, a few squirts of CBD oil and a massage on it from Dave and it has eased up. It’ll be gone in the morning. But that won’t stop it coming back tomorrow or the day after. Or the day after that and the day after that.

Then it hit me. I’m probably going to have this pain every single day for the rest of my life. Or every other day. 

I cried my eyes out. What else is there to do? I feel better for it, but it doesn’t fix it. The pain will still come back tomorrow. 

I can’t fault the amazing treatment that I’ve had. Hopefully it’ll stop any further relapses and progression but it won’t stop what I already deal with. 

Today, I am not ok. But tomorrow is another day, and hopefully a brighter one.

On my soapbox. Literally. (Part 2) 

Before reading, if you missed Part 1 you can catch up here! It’s also important to note that the topic of this blog is focussed on Relapsing Remitting MS.

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The day after my previous blog about Corrie, I was reading some spoilers (one of my favourite past times!) so I knew that Johnny becoming unwell was imminent.

During Friday’s episode, following being caught having kidnapped baby Suzie, we found Johnny in hospital. He’s not doing so well. He’s not doing well because he’s not been taking his medication for his MS for weeks. And this is where I think Corrie have got it a little wrong. 

It’s great that Corrie are finally remembering to do something with it, but I feel the need to clear up a couple of “misrepresentations”. 

Misrepresentation One: Johnny is only having a relapse (new symptoms) because he’s stopped taking his medication.

This is inaccurate. It’s not entirely clear what medication Johnny is on, but it’s easy to work out he’s on a daily self-administered medication rather than something like Lemtrada (which if you’re a regular reader, you’ll know is how I’m managing my MS). 

No medication is proven to completely stop relapses. The only thing it will do is slow them right down i.e. reduce the frequency in varying degrees of success. That means you can still have a relapse regardless of whether you take your medication or not. Of course, it is more likely that you will have a relapse if you don’t take your medication, but the reality is, no medication is 100% effective.

Misrepresentation Two: Johnny experiences no  MS related pain or problems as long as he takes his medication. When he’s between relapses, he’s completely fine.

Again, this isn’t a fair portrayal of MS. Once you’ve had a relapse and got yourself a few new symptoms, they never really 100% leave you. It’s rare to be symptom free. The extremity of it usually eases significantly after a relapse, but depending on what it is and how it affects you, it lingers. 

For example, my legs have “tingled” for eight years. When it first started, it was an awful numb feeling through my entire  body from the waist down. I had no sensation. Since that relapse, sometimes it can be all the way up to the tops of my legs and even into my lower back. Most of the time it’s a light tingle I barely notice, that doesn’t go further than between my feet and my lower leg. At other times it can be on the verge of pain. Heat can be a factor in making it “flare” as can tiredness or picking up infections. Oh and you guessed it, stress (amongst a whole bunch of other things).

It could be argued that Johnny has clinically isolated MS or it’s not that active or serious. But if that was the case, chances are he wouldn’t be medicating in the first place. It just doesn’t add up.

I get it must be hard to explain an invisible illness. How do you portray something that nobody can see? There are ways. People could simply ask Johnny how he is from time to time and he could complain about an invisible symptom. He could have the occasional bit of poor balance or walk with a limp. 

I’ve said it before and I’ll say it again. Soaps are well placed to raise awareness on all issues, I just wish that when they do give somebody something that’s a lifelong condition, they do more than just remembering to portray it when it suits them, or it fits with the storyline.