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Me, MS and I.

So I was unfortunate enough to be diagnosed with MS at a very young age; 22 to be exact. Round about that time I was finishing my university degree, looking forward to leaving the university ‘bubble’ and making a go of my business in the real world. Unfortunately, my life didn’t exactly go as I dreamt it would.

A week after leaving university I was diagnosed with this disease called ‘MS’. I’d never really understood what it was nor did I appreciate what it is like to have it. I associated it with a wheelchair and disability as many people probably do. In reality, 4 years on, nothing can be further from the truth.

When Bella Grayson approached me about writing a post - I wanted to write an uplifting post, no doom and gloom of negativity like other blog posts that I’ve read.

 Today, I will uncover my secrets for living with MS.

 Firstly, please understand everybody’s MS is different. You may have all of my symptoms but you also may not have any and instead have your own range. Secondly, I have made a lot of choices in my life to make it easier for me to look after myself; I understand this may not be possible for your situation. I do, however; believe in the power of positivity and a person’s willingness to change their situation. I strongly believe that changing your mindset helps you deal with a lot.

One thing I do just want to note is that my MS is a type of relapsing-remitting MS. I imagine my MS could be a lot worse if I didn’t have the lifestyle that I have decided to have (working from home, sleeping in the day, being careful about what I eat etc.), the medication I am taking as well as having the amazing MS nurses and neurologists at the Leicester General Hospital looking after me.

What I want you to take from this, amongst all other things, is the positivity. I believe this is crucial for managing your MS. Before we go any further, purchase a book called ‘The Miracle Morning’ by Hal Elrod; it has changed my life completely. Thanks to this book I’ve gone from being an anxious worrier to a strong warrior.

The main symptoms I struggle with are Weakness, fatigue, tingling, pain, foggy-ness/cognitive problems, balance problems and anxiety/depression. I’ll take each of these in order and explain what they are and how I get around them/deal with them, maybe they can help you too?  

 

Weakness

First of all, this is the most annoying symptom I have. I hate it. If you’re reading this and have this too, you may agree, if you’re reading this and don’t have MS/another type of invisible illness then you should be grateful you don’t have it. Seriously. There is nothing more invigorating than getting up and collapsing – especially in front of people.

Joking aside, weakness is a common MS symptom, like all symptoms it occurs when the myelin around the nerve cells is attacked and broken. Signals from the muscles then aren’t transmitted to the brain through the nerve cells, in the same way, meaning we get this amazing weak feeling. Fantastic!

 I always say that if I can get out of bed, walk downstairs and make a cup of tea it’s going to be a good day. Weakness can make it feel like a simple cup of tea is as heavy as lifting a breezeblock. It suddenly makes things a lot more difficult.

How to deal with this? Unfortunately, the only way you can deal with it is by resting and seeing the funny side. Seeing the funny side may seem impossible but like I say, read and follow The Miracle Morning and get your mindset in the right place to deal with the situation. It helps I swear!

When I had my first ever relapse, the left side of my body went completely numb. I couldn’t pick up little things like the change out of my purse with my hand or even walk without tripping over my own foot - it was horrendous. But I do remember one night I came home from somewhere and my partner had made my favourite dinner to cheer me up – Spaghetti! As sweet as this was though, I found I couldn’t actually twirl the spaghetti around my fork and ended up having a hysterical moment somewhere between laughing like a crazy person and sobbing into the pasta simultaneously.

As with a lot of MS symptoms, there isn’t actually a simple fix. I personally feel more symptoms when I’m extra tired and done too much so resting is good, normally it sorts itself out and the strength does come back eventually, I promise. It may take an hour, it may take two months or even a year, but it should come back. 

If you are concerned about your weakness contact your MS nurse and talk it through with them. In severe cases, they may suggest a treatment of steroids or similar to help. But in most cases, their advice is to just ride it out. Sigh.

 

Fatigue

‘Normal’ healthy people don’t understand this one. It likely drives you as NUTS as me when people ask how you are and you say ‘Oh I’m not too bad, just feeling more exhausted today from doing so much yesterday’ they always seem to respond with ‘Oh me too, I’m totally wiped out every day’. I just want to scream at them! When I say I’m exhausted it means a lot more than just being exhausted, it means I have more pain, weakness, tingling, cognitive problems and so many more symptoms. I have explained this to them a million times but each time seem to get the same answer. Maybe they don’t believe me? Maybe because they just don’t get it? Fatigue aggravates every one of my symptoms, is it the same for you? 

I have to have what I call ‘an old lady nap’ every day at around the same time. For some reason, at around lunchtime between 12-2pm, it’s like this fog comes over me and drains every once of energy of my body. My mind just shuts down. I become weak and as a result - woah - do I get moody. The best thing to do here for me is to stop whatever I’m doing and lie down. Immediately. You may or may not feel the same. I am currently taking Tecfidera, which I think adds to the wiped out feeling; just add a dry mouth, and flushing and there’s just a whole new edge to the MS game! I can sometimes push through it, but most of the time it’s easier to rest and get it out the way.

Back when I was first diagnosed I was working as a fashion designer in Leicester. The same thing would happen, except I’d be stuck at a desk in the middle of an office. Luckily, as it was a small team, I was alone in the office a lot especially around lunchtime and so was forced on many occasions to tentatively close my eyes. It was crazy difficult looking at a screen all day anyway and with the added 3-hour commute - I was exhausted by mid-morning alone.

Before MS I had never experienced anything like this kind of tiredness. I wasn’t one that always had an ‘assumption’ that things were wrong, you know how people say ‘I’d had symptoms for years but didn’t know what they were? So it was a relief to be diagnosed’ I didn’t have that - it literally came completely out of the blue. So this version of tiredness absolutely hit me like a ton of bricks and I can’t possibly describe how it makes you feel if you’ve never felt it, although I can give it my best shot with metaphors! 

The question is why do we feel like this? The annoying thing is I don’t think anyone really has a definitive answer; it all just comes down to the myelin around the cells being broken down and signals not transmitting to the brain. Sucks right?

The best way to get through it is by resting. You probably get so sick and tired of nurses and doctors saying this to you – I know I do. It’s difficult when you are trying to live a normal life: to work, keep on top of the housework, look after the family, see friends, have fun, cook etc.

 One of the best things I ever did – aside from reading The Miracle Morning (and I’m seriously not on any type of commission for this book, I just really believe in it!) the best thing I ever did was start an exercise program. The Miracle Morning encourages exercise as part of your morning routine. To start with I found that doing this was just too much too soon and it wiped me out for the whole day. But it didn’t put me off. Now, after much trial and error, I’ve finally made it work for me.

My new routine for the mornings goes like this: I jump out of bed, pull on ‘workout’ clothes, take my dog for a walk – the distance of which is determined by what else I have on that day and how well I am feeling - I read some affirmations, do some visualisation (I visualise how I want my day to go, most of the time - it works too) I do some reading (something positive and uplifting – definitely no newspapers) and then write down my thoughts and goals and then I make a cup of tea and start my day. It normally takes somewhere between 30 minutes and an hour and a half, but take as long as you need, the point of it is that it sets up your mind for the day to be able to get through everything you need to get through.

 MS, I’ve learnt, likes routine. It helps with fatigue and whatever helps fatigue helps with other symptoms - so another reason why The Miracle Morning is great. Don’t get me wrong it’s hard to start with so make sure you read the book all the way through and do the 30-day challenge. This is my second attempt at doing The Miracle Morning and it’s working a whole lot more this time around because I am accepting and willing to change my mindset to improve my life.

There's a 'thing' with fatigue and spoons. It's a theory someone created about chronic fatigue and the spoons being a physical representation of units of energy to help others understand your energy levels. 

 

Tingling

Another very annoying symptom; Well ok, they all are but this is truly annoying. If you don’t have this you are lucky. I seem to get this more when it’s cold outside. So keeping warm is a must. Drinking hot drinks/soup etc. does help but at the same time try to limit your caffeine as this, for me anyway, does add to the tingling. Peppermint tea is my other go-to drink and I normally have this between every cup of normal tea unless I’m feeling rebellious.

I have also found that the tingling gets worse after I’ve eaten white sugar. So I try to limit sugary things and try my best to not have it in my tea – although I do love it. Eating healthily is tough, not going to lie but avoiding things like sugary foods, bread, white pasta, crisps etc. does help with the symptoms – at least it does with mine anyway I’m not sure the same can be said for everyone! A good healthy eating and exercise plan is very helpful and was recommended by my MS nurse.

 Tingling for me feels like static from a TV. Can you remember those old ones that had black and white fizzly, buzzing static? They generally had Teletext? Like that! Sometimes it’s a mixture of static, crawling insects, pins prodding you randomly and sometimes I just feel like I’m made of broken glass. Not everyone can relate to these but I find it’s helpful to explain it to ‘normal’ people in terms they can understand – metaphors!

This is why I created the slogan 'My nerves get on my nerves'

 

Pain

Apparently, there are many different types of MS pain. I am not going to bother listing all of them as most I wouldn’t be able to remember or even spell them for that matter! There was a great article from the MS trust on pain and MS, which you can find here

The type of pain I get – again this is different for everyone! – is a kind of sporadic shooting electricity type of pain. It’s very annoying and very painful and there’s apparently nothing I can do about it but just ride it out. Things like Paracetamol, Ibuprofen or Asprin won’t work as they treat muscular pain, whereas this is neuropathic pain.

It literally feels like I’m being zapped by a charged electric poker straight down an arm, leg, foot etc. It’s a horrible feeling and again comes on more when I’m tired. 

How do I deal with this? Putting on comfortable clothing (like my pjs or a comfortable hoody) and just snuggling up on the sofa with TV or a film. The pain generally happens when I’m really tired so normally towards the end of the day, although sometimes it starts going throughout the day too, annoying when you’re trying to work.

It's a strange thing; looking normal on the outside but feeling broken on the inside. 

Foggy-ness/Cognitive problems

Oh boy, this is where it gets fun. Not.

So at 26 years old, I go through fazes of not remembering what day it is, not being able to think clearly and getting confused easily not being able to do normal things like making a shopping list or even read an email. It’s all just disrupted up in there with no way of making sense of anything.

My speech slurs. I can’t think of words. I can’t string a sentence together and sometimes I even forget what I’m saying halfway through a sentence. It just vanishes! Blank!

This is really not fun. Do you have the same?? It’s quite a common symptom, which again, I don’t feel ‘normal’ people understand. The most common response if I tell someone this is ‘Oh, I get that all the time’ and yes maybe they do, but please see that it’s different!

I know that it’s hard for someone not in this situation to understand but a little empathy goes a long way!

Again, cognitive disruption changes in severity throughout the day and is worse toward the end of the day. Fun, fun, fun!

 

Balance problems

This one is like being drunk without even drinking! ‘I’m not drunk, I have MS’ is a very relevant slogan here. It’s definitely not as fun as it may sound. There have been a few incidents when I’m sure people on the street have thought I genuinely was drunk because I was staggering all over the place and walking into things.

In reality, nope… perfectly sober just having a wobbly kind of day. For me, this goes hand in hand with weakness as most of the time I get this when I’m feeling weak. Other times though it just happens and is one of those things. We make jokes about it in our house now about me being a ‘cheap date’ because I don’t even have to drink to look ‘drunk’. Har Har.

This is a special symptom I think because it’s one of the only ones that are actually visible to others. MS is very much like an iceberg. The bit sticking out of the water are the symptoms you can see and everything else that is ‘unseen’ (the tingling, the weakness, the fuzziness etc.) is hidden under the water – unless someone bothered to look for them – they wouldn’t know they’re even there.

 

Anxiety/depression

I wish I could be free of anxiety and depression. It’s crazy. Most of the time I try my hardest to keep it in a metaphorical ‘cage’ but when it gets out… it really gets out.

Despite being on medication for anxiety (Fluoxetine) I do still get quite anxious if I allow myself to. It’s extremely difficult with MS to stay strong because you are so tired ALL THE TIME it just wears you down. Fighting it is tough and sometimes anxiety and depression just take over you. Another reason to try The Miracle Morning! It’s helped strengthen my mind and keep my anxiety at bay much more.

From the information I’ve read online, the simple answer people give for anxiety and depression is to ‘stay positive’. It is easier said than done and if you do have anxiety or depression it is very easy to dismiss this advice. However…

There may be other reasons why you’re depressed or anxious, not just because of a medical condition. These could be reasons such as childhood issues you may not be aware of, a job you hate, or your own self-image. Whatever they are, it’s important to work them out, evaluate yourself, talk through them with professionals and figure out what is behind these feelings. Why do you have them? How can you move forward? What do you have to do to be able to be happy?

It is so important to be self-aware and to figure out why you are the way that you are.

Let me tell you a short story… A long time ago I used to be silent. I used to tear up at any slightly negative sounding comment towards me. I took everything personally and blamed everyone and everything around me for everything. I was depressed all the time. I didn’t feel comfortable being around people, or friends or family. I didn’t feel good enough. I met someone years later who was an amazing business/developmental coach. She got me speaking through everything and got to the bottom of why I was the way that I was.

I was that way because of my parents. My dad - at the time - was a very negative, blameful person who shot me down at every opportunity and told me I wasn’t good enough to do anything but be a model. My mum, although she was supportive to me, put down everyone around her and I thought that’s how everyone else was, judgemental and negative. I also now realise I was blaming myself for my parent's unhappy marriage; I thought I was the cause. Thing is I didn’t realise I was hanging onto any of this.

After a lot of upset, talking through things with both of them and some time apart we have come to a new understanding of each other and have been able to all move on. I’m so proud of them both now for how far they have both come, turns out they were both hanging onto their own childhood issues and putting them onto me.

I have moved on from that negative mindset and I’m now doing things I never thought I would, like running my own business from home, winning awards, joining an amateur dramatics society, taking singing lessons, even coaching other people. I could only do these things by dealing with the issues that I had holding me back. You feel incredibly free once you have these demons diminished and have a more positive outlook on life. I urge you to self-evaluate today and see the difference it makes.

But alas, life is not perfect and my anxiety nowadays occasionally still flares up. Not because I’m hanging onto emotional baggage but just because it is a symptom of my MS and I’m not ashamed of it anymore. When this happens I talk things through with my husband - who is incredibly supportive and helpful. I think about what I am most grateful for and I spend time with my dog. Friends and family help occasionally lift my spirits but I think they’re in negative mindsets at the moment and don’t help as much as they could. My dog always listens. I know this sounds a little silly, but she knows when I’m not feeling right and gives me cuddles. Bless her. She’s the best cure for depression and anxiety I know of.

When I’m in this mindset I try to avoid unhealthy behaviours such as eating bad foods, drinking and I’ve never smoked or done drugs in my life ever. But I know that if I did all these things I would feel twice the symptoms and know that it really wouldn’t help and it’s just not worth it. Stay strong, you can do it.

That’s pretty much everything really. I’m not perfect and I don’t try to be. Like I say you may or may not feel these symptoms, you may have more or less. You may or may not find my tips to deal with them helpful but take from this what you can and I definitely urge you to look at The Miracle Morning. I really hope you’ve been inspired – even if it’s just a little bit.

In conclusion, the best ways to deal with MS is with routine, exercise, healthy eating, limiting caffeine, keeping a positive mind and following the advice your MS nurse/neurologist says. Lastly, listen to your body; it’s telling you what it needs.

Thank you, Bella Grayson, for inviting me to write a blog post for you on behalf of the Invisible Illness Warriors. Take a look at my newest collection of kick-ass products that I’ve designed to help empower those with MS and other invisible illnesses here: https://bellagrayson.com/collections/invisible-illness-empowered

Together we can change the perception of invisible illness and bring it to the forefront of ‘normal’ people’s minds. If you have an invisible illness (including MS) know that you are not alone. Feel free to contact me anytime at [email protected]

Thank you,

Jessie Ace x 


1 comment

  • What a lovely blog jess my symptoms are very similar i haven’t had a full 100% diagnosis just waiting for neurology but have had confirmation from spinal consultant this is what i have , my symptoms are troublesome but i cope the best I can, thanj you for sharing this for us to read ….

    Alison glass

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